One of WINK's new TSS's (let's just say that is how to make TSS plural) is over the house today. Right now, in fact. My first impression upon meeting her was that she looks like an adolescent milk-maid. She's extremely soft-spoken and so laid back I half expected her to sit on the couch in full lotus position. I asked her how she thought this first meeting should go. Did she want to talk to me and DAD about our concerns since she had not yet spoken to WINK and SMILE's new BSC (strike one, by the way)?
"No, that's alright," she said. "I think I'll just observe WINK without trying to guide him to one activity or another."
"Okay, sure," I enthusiastically replied. I want to be agreeable. I'm going to try really hard to be agreeable, anyway. I'm a very laid back person. I am, really. But when it comes to the professionals in my boys' lives, I'm a bit...opinionated...because "good enough" isn't an option.
Tick tock, tick tock. Tick... tock. Okay, really? WINK has been drawing on his magna-doodle for the past 15 minutes with his TSS meekly smiling beside him. I can do that, Princess! Interact with him, see what he does. See if he gets anxious, stuck on a decision, fixed on rules. TAKE NOTES!!!
"Umm...excuse me. I'm a type A personality," I say, hoping my apologetic smile hides what I'm thinking. "Would you like me to facilitate a game between you and WINK?" I'm pretty sure there was a moment where her eyes locked on mine. But then again, I'd swear there were tumbleweeds blowing through my living room, too, so maybe my perspective is skewed. She reiterated that she would like to spend this time just observing but that, if I thought it was best, a game would be fine. DAD asked WINK if he wanted to play a game and he jumped at the opportunity. Seriously, we are now a very literal family, he jumped at the chance.
Satisfied, I graciously took my leave and came upstairs to write this. I should get back down there soon so I can catch the last half hour or so and, hopefully, steal a few minutes to discuss her thoughts. I better see notes!
But, the real test is WINK. If he likes her and starts to connect with her, I'll welcome her into my home gladly.
Thursday, December 30, 2010
Wednesday, December 22, 2010
It Shouldn't Matter...
I don't know how to swim. I'm not proud of it but I've never learned. So, I've always wadded in the shallow sections of pools or used boards or rings to float. But I've very rarely drifted over to the deep end and, the few times I have, I've struggled wildly to get back to a point where I can plant my feet back on the ground.
I've often felt like my journey with autism has been like using floaties in a pool. But, for me, I've been safe in the shallow side. Until now.
I just received SMILE's official results for the A(utism) D(isorder) O(bservation) S(cale) test he had done in November. He scored higher than I originally thought so he is in the "real" autism category rather than "mild".. The results came with another envelop that detailed the results of blood work. Turns out, SMILE has duplicate information on chromosome 22 and that is likely to cause developmental delays and is common in children on the ASD spectrum. I barely understand this but our next step is getting blood work done on me and DAD to see if we have this...I don't know....mutation?...too.
So...this is real now. Funny, because I would have said it was real to me before, that I made myself accept this as soon as he was diagnosed eight month ago. Or even before that. An hour ago, I would have said I accepted this as real the day I observed him in his pre-school room 11 months ago and just sort of knew that my son was autistic. But the thing about a diagnosis of autism is that there is no definitive test that can pinpoint that, yep, it's autism. But now...here is this paper that states clearly that SMILE has a concrete deviation in his genetic makeup.
Don't misunderstand me, though. I adore my little puzzle piece (both of them!). This news doesn't change how I see him or the prognosis I have set for him (because, excuse me, screw the doctors). He'll be fine. It's just that... he's not going to outgrow this. I didn't realize until just this moment that I had been holding on to that irrational hope. So now what?
Learn to swim, I guess.
I've often felt like my journey with autism has been like using floaties in a pool. But, for me, I've been safe in the shallow side. Until now.
I just received SMILE's official results for the A(utism) D(isorder) O(bservation) S(cale) test he had done in November. He scored higher than I originally thought so he is in the "real" autism category rather than "mild".. The results came with another envelop that detailed the results of blood work. Turns out, SMILE has duplicate information on chromosome 22 and that is likely to cause developmental delays and is common in children on the ASD spectrum. I barely understand this but our next step is getting blood work done on me and DAD to see if we have this...I don't know....mutation?...too.
So...this is real now. Funny, because I would have said it was real to me before, that I made myself accept this as soon as he was diagnosed eight month ago. Or even before that. An hour ago, I would have said I accepted this as real the day I observed him in his pre-school room 11 months ago and just sort of knew that my son was autistic. But the thing about a diagnosis of autism is that there is no definitive test that can pinpoint that, yep, it's autism. But now...here is this paper that states clearly that SMILE has a concrete deviation in his genetic makeup.
Don't misunderstand me, though. I adore my little puzzle piece (both of them!). This news doesn't change how I see him or the prognosis I have set for him (because, excuse me, screw the doctors). He'll be fine. It's just that... he's not going to outgrow this. I didn't realize until just this moment that I had been holding on to that irrational hope. So now what?
Learn to swim, I guess.
Saturday, December 18, 2010
Piggy Nightmare
The other night, DAD came home, giddy with excitement, because he stopped at B&N and bought Elephant and Piggy dolls for the boys (these are characters from a children storybook series). They were supposed to be stocking stuffers but then SMILE had a bit of a breakdown at story time.
"Go get the dolls," I mouthed over SMILE's head as I tried to soothe him. Quick as a flash, DAD propelled himself off the bed, through the door, and into our secret Christmas gift hiding place. Smiling ear to ear, DAD quoted a line from one of the books ("It is...a reader!") and produced the dolls with a grand "ta-dah!"
WINK yelped with delight and SMILE shrieked...with horror! DAD deflated. We looked at each other, wide eyed and slack-jawed, while our little SMILE sobbed and yelled, "I don't want it! That's not right," over and over. I kissed his head and smoothed his hair. We took the doll away. DAD tried to redirect Smile's attention by giving him his favorite Elephant and Piggy book to read. As he quieted, I made the connection.
"SMILE? Is Piggy supposed to be in the book?"
That was it. I smirked at DAD and flopped down back on my pillow while SMILE read his book, his lyrical voice losing all trace of anxiety as he turned the pages. By the time he closed the book, he was ready to hold his new toy. He even slept with it tucked under his arm close to his chest.
So, what happened? My guess is that SMILE had become upset when DAD and I changed his routine slightly (it was getting late) and, once upset, couldn't reset his brain when he saw something that should have made him happy. Furthermore, obvious lines between real and make believe/ serious or playing are blurred for him. It's not that he doesn't know the difference. It's just that, sometimes, he needs a minute to remember that he does. I guess that he really thought Piggy was in the wrong place and was only assuaged when he read the book and saw that Piggy was safe and sound.
Sometimes SMILE'S wires get a little crossed and I'm reminded why the symbol for Autism is a puzzle piece.
"Go get the dolls," I mouthed over SMILE's head as I tried to soothe him. Quick as a flash, DAD propelled himself off the bed, through the door, and into our secret Christmas gift hiding place. Smiling ear to ear, DAD quoted a line from one of the books ("It is...a reader!") and produced the dolls with a grand "ta-dah!"
WINK yelped with delight and SMILE shrieked...with horror! DAD deflated. We looked at each other, wide eyed and slack-jawed, while our little SMILE sobbed and yelled, "I don't want it! That's not right," over and over. I kissed his head and smoothed his hair. We took the doll away. DAD tried to redirect Smile's attention by giving him his favorite Elephant and Piggy book to read. As he quieted, I made the connection.
"SMILE? Is Piggy supposed to be in the book?"
That was it. I smirked at DAD and flopped down back on my pillow while SMILE read his book, his lyrical voice losing all trace of anxiety as he turned the pages. By the time he closed the book, he was ready to hold his new toy. He even slept with it tucked under his arm close to his chest.
So, what happened? My guess is that SMILE had become upset when DAD and I changed his routine slightly (it was getting late) and, once upset, couldn't reset his brain when he saw something that should have made him happy. Furthermore, obvious lines between real and make believe/ serious or playing are blurred for him. It's not that he doesn't know the difference. It's just that, sometimes, he needs a minute to remember that he does. I guess that he really thought Piggy was in the wrong place and was only assuaged when he read the book and saw that Piggy was safe and sound.
Sometimes SMILE'S wires get a little crossed and I'm reminded why the symbol for Autism is a puzzle piece.
Wednesday, December 8, 2010
Filling in the Blanks
A few friends have suggested that I write a post that is geared towards readers who do not have a personal connection to someone with an ASD. This makes me laugh, not because I think it isn't needed (I do), but because this infers that I'm an authority on the subject. Which, I suppose, I am becoming a little more each day.
So, I thought about it and realized that there is a lingo, a separate language, that people caught in the spectrum conundrum (he he!) use. Here are a few highlights:
Autism Spectrum Disorder (ASD): There are five disorders that are on the spectrum. They are Autism, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Aspergers, Childhood Disintegrative Disorder (CDD), and Rett Syndrome. There are some commonalities among these disorders: Speech delays, gross and fine motor skills delays, sensory processing issues, verbal (difficulty with speech or no speech) and nonverbal communication issues (i.e. trouble making eye contact), social difficulties (i.e.understanding other people's emotions, sharing emotions, holding a conversation), and stereotyped behaviors. It's my understanding that Rett Syndrome affects only girls but it is similar to CDD in that children with these disorders are often asymptomatic until age 2 with no previous delays, atypical development, or missed milestones. So, what's the difference between autism, aspergers, and PDD-NOS? I have no idea and neither do many professionals. What I've come to understand is that children on the spectrum defy categories every day and these disorders are fluid. Most professionals I've spoken to use just ASD as a diagnosis because the focus of treatment needs to be the specific challenges each child has and not the label. Having said that, the presence of speech seems to be a defining factor. Many doctors believe that if speech developed to any extent before the age of 2 without intervention, that child does not have classic autism. Others disagree. Aspergers children seem to be fixated with certain subjects, become obsessive with rules, interpret things very literally, and are enormously awkward socially, in addition to the other ASD issues. SMILE has received both the classic autism diagnosis and PDD-NOS. WINK's only diagnosis has been Aspergers.
Stereotyped behaviors: Spinning, hand flapping, repeating words or phrases, strict adherence to routines, repetitive playing (i.e. spinning the wheels on a car)
Sensory processing issues: Some children are sensory seekers (the more the better) and others are sensory avoiders (it's all too much). Likewise, their behavior is designed to either cause more or less sensory input. Either way, children with these issues respond differently to the sensory stimuli they receive. Lights may be too bright/ too dim, sounds too loud/too quiet, gentle touches may be abrasive, firmer touches may be perceived as too light. Some children on the spectrum cannot stand to be touched. Others are calmest when they are snuggled or wearing confining clothing.
BSC and TSS: Both are mental health professionals. The BSC is a Master's level clinician who develops a behavioral treatment plan for a child. This treatment plan (called a Functional Behavior Analysis- FBA) spells out the issues that need to be addressed and the best ways to reach behavior goals (i.e. becoming more flexible in play, learning non-aggressive coping skills). The TSS is the individual who carries out the FBA by working one on one with a child in the home, community, and/or school.
Comorbidity: This refers to a disorder, or number of disorders, that exist along side a primary disorder. For example, OCD is a common comorbid disorder for ASD children.
I'll add on to this as I think of other terms that should be defined or explained. Confused? That's okay. Me too.
So, I thought about it and realized that there is a lingo, a separate language, that people caught in the spectrum conundrum (he he!) use. Here are a few highlights:
Autism Spectrum Disorder (ASD): There are five disorders that are on the spectrum. They are Autism, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Aspergers, Childhood Disintegrative Disorder (CDD), and Rett Syndrome. There are some commonalities among these disorders: Speech delays, gross and fine motor skills delays, sensory processing issues, verbal (difficulty with speech or no speech) and nonverbal communication issues (i.e. trouble making eye contact), social difficulties (i.e.understanding other people's emotions, sharing emotions, holding a conversation), and stereotyped behaviors. It's my understanding that Rett Syndrome affects only girls but it is similar to CDD in that children with these disorders are often asymptomatic until age 2 with no previous delays, atypical development, or missed milestones. So, what's the difference between autism, aspergers, and PDD-NOS? I have no idea and neither do many professionals. What I've come to understand is that children on the spectrum defy categories every day and these disorders are fluid. Most professionals I've spoken to use just ASD as a diagnosis because the focus of treatment needs to be the specific challenges each child has and not the label. Having said that, the presence of speech seems to be a defining factor. Many doctors believe that if speech developed to any extent before the age of 2 without intervention, that child does not have classic autism. Others disagree. Aspergers children seem to be fixated with certain subjects, become obsessive with rules, interpret things very literally, and are enormously awkward socially, in addition to the other ASD issues. SMILE has received both the classic autism diagnosis and PDD-NOS. WINK's only diagnosis has been Aspergers.
Stereotyped behaviors: Spinning, hand flapping, repeating words or phrases, strict adherence to routines, repetitive playing (i.e. spinning the wheels on a car)
Sensory processing issues: Some children are sensory seekers (the more the better) and others are sensory avoiders (it's all too much). Likewise, their behavior is designed to either cause more or less sensory input. Either way, children with these issues respond differently to the sensory stimuli they receive. Lights may be too bright/ too dim, sounds too loud/too quiet, gentle touches may be abrasive, firmer touches may be perceived as too light. Some children on the spectrum cannot stand to be touched. Others are calmest when they are snuggled or wearing confining clothing.
BSC and TSS: Both are mental health professionals. The BSC is a Master's level clinician who develops a behavioral treatment plan for a child. This treatment plan (called a Functional Behavior Analysis- FBA) spells out the issues that need to be addressed and the best ways to reach behavior goals (i.e. becoming more flexible in play, learning non-aggressive coping skills). The TSS is the individual who carries out the FBA by working one on one with a child in the home, community, and/or school.
Comorbidity: This refers to a disorder, or number of disorders, that exist along side a primary disorder. For example, OCD is a common comorbid disorder for ASD children.
I'll add on to this as I think of other terms that should be defined or explained. Confused? That's okay. Me too.
Monday, December 6, 2010
A Very Merry Birthday
My Little WINK just turned 8 and he had a great birthday with his extended family. I'll post a picture of his Aspie/OCD cupcakes soon. There's a bit of everything from the Wilton aisle piled on because he couldn't make any decisions.
Monday, November 29, 2010
Careful What You Wish For...
SMILE's language skills are improving every day. He speaks so clearly, or tries to, and is so proud of himself. But...now I am seeing how manipulative and super smart he is. Take this for example:
Yesterday, the boys were arguing over who would get to play the Wii first when we got home. WINK asked first, SMILE burst into tears because "{HE} WAS JUST ABOUT TO ASK!" and Dad and I were already feeling migraines coming on. So, as we often do, Dad and I intervened. "WINK," we said, "you were nice enough to let SMILE go first yesterday. You get to go first." Screaming, both joyful and indignant, drowned out all sounds coming from the car and near-by construction. Then Dad asked WINK if he wanted to help him put together a kitchen bench we had just bought.
Immediately, and I mean as soon as Dad spoke the last syllable, SMILE piped up. "That's a GREAT idea, {WINK}. You can help Daddy," he said, his little tone oozing sweetness, "and I can play the Wii!"
And my beautiful WINK let him.
Yesterday, the boys were arguing over who would get to play the Wii first when we got home. WINK asked first, SMILE burst into tears because "{HE} WAS JUST ABOUT TO ASK!" and Dad and I were already feeling migraines coming on. So, as we often do, Dad and I intervened. "WINK," we said, "you were nice enough to let SMILE go first yesterday. You get to go first." Screaming, both joyful and indignant, drowned out all sounds coming from the car and near-by construction. Then Dad asked WINK if he wanted to help him put together a kitchen bench we had just bought.
Immediately, and I mean as soon as Dad spoke the last syllable, SMILE piped up. "That's a GREAT idea, {WINK}. You can help Daddy," he said, his little tone oozing sweetness, "and I can play the Wii!"
And my beautiful WINK let him.
Friday, November 19, 2010
It's All Working!!!
SMILE saw yet another evaluator yesterday. Hat's off to my little guy, too, because he's been poked and prodded a lot lately. But this was for a "play" type test called the ADOS (I can't wrap my mind around what the acronym stands for), which is supposed to be the gold-standard for diagnosing autism.
The only rule for DAD and I was that we weren't able to prompt SMILE during the test. The evaluator tried to engage him in a variety of tasks (clay, puzzles, bubbles, etc) and watched his reaction to a variety of situations. Was he going to freak when he realized there was a piece missing from the puzzle? No. What about when she sang "Happy Birthday" to a stuffed frog? Yeah, a little. Will he react when the evaluator pretends to be surprised about something under the table? Nope, couldn't care less. Smile was a bit twitchy and did the lobster hand thing a few times. He didn't want to stop talking about bubbles once he got the chance to play with them and, when he accidentally spilled a tray of letter blocks, he started repeating "D, D, D" over and over.
But then...he made a butterfly out of clay, looked up, and asked the evaluator, "Do you like butterflies?" I was a flurry of controlled and silent motion. I leaned forward, eyes wide and immediately wet with tears, grabbed Dad's hand, looked into his just as wide eyes, and mouthed, "That was amazing!" He asked a question! A real one that sought information about someone else. Sure, he's done this with WINK, DAD, and I. He's probably done it with select extended relatives, too. But THIS was a stranger and not prompted. THIS was great progress.
So....it's working. The TSS time, the speech/ occupational/ physical therapies, the games DAD and I play, all of it. My little guy is coming back to all that potential he was born with. The evaluator spoke to DAD and I about expectations for the future and what we could expect for SMILE. She referred to a piece of paper where she had charted SMILE's test results on a scale of 0-24. She said something about his best chances for progress lying in the 0-7 area of the chart. That's not SMILE's box. Neither is the next one. But...these test results are fluid and they change all the time as the child receives more and more services. Seven months ago, SMILE probably would have scored much higher. He may have even scored higher or lower on a different day.
So, we don't know much more than we did 24 hours ago but here's where MOM trumps all the professionals. He's going to be great. That's not wishful thinking, or sentimental eyes making that observation. It's fact. He will be great because he already is.
The only rule for DAD and I was that we weren't able to prompt SMILE during the test. The evaluator tried to engage him in a variety of tasks (clay, puzzles, bubbles, etc) and watched his reaction to a variety of situations. Was he going to freak when he realized there was a piece missing from the puzzle? No. What about when she sang "Happy Birthday" to a stuffed frog? Yeah, a little. Will he react when the evaluator pretends to be surprised about something under the table? Nope, couldn't care less. Smile was a bit twitchy and did the lobster hand thing a few times. He didn't want to stop talking about bubbles once he got the chance to play with them and, when he accidentally spilled a tray of letter blocks, he started repeating "D, D, D" over and over.
But then...he made a butterfly out of clay, looked up, and asked the evaluator, "Do you like butterflies?" I was a flurry of controlled and silent motion. I leaned forward, eyes wide and immediately wet with tears, grabbed Dad's hand, looked into his just as wide eyes, and mouthed, "That was amazing!" He asked a question! A real one that sought information about someone else. Sure, he's done this with WINK, DAD, and I. He's probably done it with select extended relatives, too. But THIS was a stranger and not prompted. THIS was great progress.
So....it's working. The TSS time, the speech/ occupational/ physical therapies, the games DAD and I play, all of it. My little guy is coming back to all that potential he was born with. The evaluator spoke to DAD and I about expectations for the future and what we could expect for SMILE. She referred to a piece of paper where she had charted SMILE's test results on a scale of 0-24. She said something about his best chances for progress lying in the 0-7 area of the chart. That's not SMILE's box. Neither is the next one. But...these test results are fluid and they change all the time as the child receives more and more services. Seven months ago, SMILE probably would have scored much higher. He may have even scored higher or lower on a different day.
So, we don't know much more than we did 24 hours ago but here's where MOM trumps all the professionals. He's going to be great. That's not wishful thinking, or sentimental eyes making that observation. It's fact. He will be great because he already is.
Sunday, November 14, 2010
Resiliency
SMILE amazed me today. DAD had the daunting task of taking SMILE to get blood tests completed today. I wanted no part of it. swearing that I would scoop up my child at the first whimper. DAD and I had planned on not preparing him for the trip in an effort to head off severe tantrums that would have made leaving the house impossible. DAD was just going to take him and spoil his little butt off when it was done in an effort to erase the experience from both their minds. But, to explain why he needed to get dressed, DAD told SMILE they were going out "for a surprise." I grunted at the mistake and decided we needed to be honest so SMILE wouldn't feel betrayed by the well-intentioned fib.
Mistake. SMILE's face crumbled as soon as we said he was going to the doctor's. "I don't want a needle!" he whimpered between deep breaths and sobs. "I'm fine." Dad and I tried to be soothing without saying that it wouldn't hurt. We told him it would be quick. We told him he would get a new book (or ANYTHING else he wanted) when it was over. Many more minutes of crying passed. Then...he sighed, stiff sniffling and moaning a bit, and said "I know I have to go...but I'm annoyed about the needle."
After the one more show we promised he could watch, SMILE dutifully allowed DAD to get his shoes on and left without complaint. A little over an hour later, I got the phone call I had been waiting for. SMILE did great! He didn't struggle, he didn't cry. He even watched the needle go in (TWICE!) SMILE got on the phone and cheered, "Mommy! I did great job! I was brave." In fact, DAD told me that he walked through the waiting room when it was over shouting excitedly, "It didn't even hurt." One of the nurses called to him and gave him a thumbs up. SMILE smiled and...raised his index finger proudly in response. Hey! Close enough!
Mistake. SMILE's face crumbled as soon as we said he was going to the doctor's. "I don't want a needle!" he whimpered between deep breaths and sobs. "I'm fine." Dad and I tried to be soothing without saying that it wouldn't hurt. We told him it would be quick. We told him he would get a new book (or ANYTHING else he wanted) when it was over. Many more minutes of crying passed. Then...he sighed, stiff sniffling and moaning a bit, and said "I know I have to go...but I'm annoyed about the needle."
After the one more show we promised he could watch, SMILE dutifully allowed DAD to get his shoes on and left without complaint. A little over an hour later, I got the phone call I had been waiting for. SMILE did great! He didn't struggle, he didn't cry. He even watched the needle go in (TWICE!) SMILE got on the phone and cheered, "Mommy! I did great job! I was brave." In fact, DAD told me that he walked through the waiting room when it was over shouting excitedly, "It didn't even hurt." One of the nurses called to him and gave him a thumbs up. SMILE smiled and...raised his index finger proudly in response. Hey! Close enough!
Friday, November 12, 2010
My Fondest Wish
"Once upon a time..." That's how all great stories start, right? Maybe not the ones that win Pulitzers, but the ones that stay with us from cradle to adulthood do. So began my boys' story.
Once upon a time...there was a girl who was shy and scared of the world and most of the people in it. She had figured out at a young age that the best way to get through life was with her eyes averted and her head hung down. But then this girl found a true friend and her world changed.
No one understood this friendship. The girl was so mousy and bland. The friend was so gregarious and SO VERY LOUD! Why would they be friends? But these girls saw something of themselves in each other and they leaned on one another, learned from one another, and loved each other unconditionally. And the friend gave the girl a precious gift: a voice.
As the years passed, the girl became a woman, got married, forged a career...and had two boys. One of them is afraid of the world and most of the people in it.
So, my fondest wish is that my WINK and SMILE each finds a true friend like mine. One who will love fiercely and hold on tight while he figures out his path. One who will light his way...just like mine.
Once upon a time...there was a girl who was shy and scared of the world and most of the people in it. She had figured out at a young age that the best way to get through life was with her eyes averted and her head hung down. But then this girl found a true friend and her world changed.
No one understood this friendship. The girl was so mousy and bland. The friend was so gregarious and SO VERY LOUD! Why would they be friends? But these girls saw something of themselves in each other and they leaned on one another, learned from one another, and loved each other unconditionally. And the friend gave the girl a precious gift: a voice.
As the years passed, the girl became a woman, got married, forged a career...and had two boys. One of them is afraid of the world and most of the people in it.
So, my fondest wish is that my WINK and SMILE each finds a true friend like mine. One who will love fiercely and hold on tight while he figures out his path. One who will light his way...just like mine.
Wednesday, November 10, 2010
Giggles with WINK and SMILE
Sometimes having two boys on the spectrum just makes for a more colorful life. Take these two recent giggle moments as proof:
After returning home from speech therapy, SMILE asked if he could have a lollipop. I said he could and he quickly sat down and started in on unwrapping his treat. A few moments later, SMILE's mouth was smeared purple as he joyfully licked his way to a sugar Nirvana. I leaned over the back of the couch.
"Can I have a lick?" (Now, kudos to you if you can spot the mistake I made because I sure didn't).
"Sure," he said. My little SMILE then leaned over, cupped my chin with his sticky hand, and licked my cheek from chin to eyebrow. CAREFUL WHAT YOU ASK FOR...
I sat with WINK last night as he read a story from of his textbook. It was about a caterpillar and a duckling. Now, I know WINK has some reading comprehension problems, so I like to ask him questions after each paragraph to make sure he is keeping track of the events, characters, etc. During one of these breaks, after the caterpillar climbs up to a high leaf and doesn't come down for weeks, I asked WINK why he thinks the caterpillar did that. He said it was going to build a cocoon.
"Oh, very good. So, you think Farfanella (or whatever the name was) is going to turn into a butterfly?" I asked.
"Well, of course," WINK said in a tone that raises many questions about my intelligence, "it's a caterpillar. What else is it supposed to turn into?"
Oh.
After returning home from speech therapy, SMILE asked if he could have a lollipop. I said he could and he quickly sat down and started in on unwrapping his treat. A few moments later, SMILE's mouth was smeared purple as he joyfully licked his way to a sugar Nirvana. I leaned over the back of the couch.
"Can I have a lick?" (Now, kudos to you if you can spot the mistake I made because I sure didn't).
"Sure," he said. My little SMILE then leaned over, cupped my chin with his sticky hand, and licked my cheek from chin to eyebrow. CAREFUL WHAT YOU ASK FOR...
I sat with WINK last night as he read a story from of his textbook. It was about a caterpillar and a duckling. Now, I know WINK has some reading comprehension problems, so I like to ask him questions after each paragraph to make sure he is keeping track of the events, characters, etc. During one of these breaks, after the caterpillar climbs up to a high leaf and doesn't come down for weeks, I asked WINK why he thinks the caterpillar did that. He said it was going to build a cocoon.
"Oh, very good. So, you think Farfanella (or whatever the name was) is going to turn into a butterfly?" I asked.
"Well, of course," WINK said in a tone that raises many questions about my intelligence, "it's a caterpillar. What else is it supposed to turn into?"
Oh.
Tuesday, November 9, 2010
I dreamed a dream....
If you don't know, "I Dreamed a Dream" is a song from Les Miserables that is sung by a tragic character named Fantine. Her story line in the play is a soap opera filled with abandonment, betrayal, poverty, and the decision to offer up her daughter for adoption. When I was in high school, and was first introduced to this play, I used to belt out every line with the full force of my teenage angst behind it. Looking back, I laugh because I couldn't relate to one word of that song back then. And, as a adult, my situation bears no resemblance to poor Fantine's.
But... her song is really about the moment that she realizes that her life, her reality, is nothing like what she had dreamed her life would be when she was younger. And that, shameful as it is to admit, I can relate to.
I have a wonderful husband and two boys who are the greatest blessings in my life. But my moment of realization came seven months ago when one son, and then the other, was diagnosed with an ASD. When I was a new mom, I never dreamed that my seven year old would have such high anxiety that he can't make decisions and be so socially inept on the recess yard that he can't manage to keep a friend. I never imagined that I would still need to carry a make shift diaper bag for my five year old that now consists of umbrellas, fidget toys, a poncho, and snacks in a blue lunchbox. Once upon a time, I raised my boys along side other moms who had children as young as mine. We commiserated over colic, rashes, potty training, nap schedules, and, together, we dreamed of the day that our little ones would be more autonomous. But then...their kids grew up and, in many ways, mine didn't and the gap between the two widened. I contend with TSS schedules and intricate bed time routines that take me out of the loop for afternoon activities and moms' nights out. My boys don't interact much with other children so they aren't ideal playmates and SMILE's tantrums are epic. As a result, we aren't included in any impromptu kiddie get-togethers that my friends plan with one another. I don't think it's personal and I don't feel like my friends are doing anything wrong. We still get the invites to "family" birthday parties and anything that's planned far in advance. And I still manage to talk to them often and do "mommy day things" while the kids are in school. But... I have an overwhelming "child-centric" schedule where routine rules the day so...what could they or I do? Could I try to plan more kid events or even boldly invite myself along to the get-togethers when I hear about them? Sure. But my fear is that any idea I have (a skating party for example) could, if it goes wrong, make the boys feel more isolated (like said skating party). Same thing goes for events I invite my family to as opposed to events where we are invited. In the future, my boys' therapies may start working, and life will resemble normalcy, and I can't wait for the day. But, when I was a new mom of two and was forging friendships, I never expected to get left behind..
So, why write this? What purpose does it serve, right? Well, I think it's empowering for 'spectrum moms' (or at least this one) to step back and say, once in a while, that "I dreamed a dream in time gone by" and that this life is "so different now from what it seemed" it would be like back then. Because then, I can wake up and get back to living and a state of appreciating the blessings I have (which still includes these great friends).
But... her song is really about the moment that she realizes that her life, her reality, is nothing like what she had dreamed her life would be when she was younger. And that, shameful as it is to admit, I can relate to.
I have a wonderful husband and two boys who are the greatest blessings in my life. But my moment of realization came seven months ago when one son, and then the other, was diagnosed with an ASD. When I was a new mom, I never dreamed that my seven year old would have such high anxiety that he can't make decisions and be so socially inept on the recess yard that he can't manage to keep a friend. I never imagined that I would still need to carry a make shift diaper bag for my five year old that now consists of umbrellas, fidget toys, a poncho, and snacks in a blue lunchbox. Once upon a time, I raised my boys along side other moms who had children as young as mine. We commiserated over colic, rashes, potty training, nap schedules, and, together, we dreamed of the day that our little ones would be more autonomous. But then...their kids grew up and, in many ways, mine didn't and the gap between the two widened. I contend with TSS schedules and intricate bed time routines that take me out of the loop for afternoon activities and moms' nights out. My boys don't interact much with other children so they aren't ideal playmates and SMILE's tantrums are epic. As a result, we aren't included in any impromptu kiddie get-togethers that my friends plan with one another. I don't think it's personal and I don't feel like my friends are doing anything wrong. We still get the invites to "family" birthday parties and anything that's planned far in advance. And I still manage to talk to them often and do "mommy day things" while the kids are in school. But... I have an overwhelming "child-centric" schedule where routine rules the day so...what could they or I do? Could I try to plan more kid events or even boldly invite myself along to the get-togethers when I hear about them? Sure. But my fear is that any idea I have (a skating party for example) could, if it goes wrong, make the boys feel more isolated (like said skating party). Same thing goes for events I invite my family to as opposed to events where we are invited. In the future, my boys' therapies may start working, and life will resemble normalcy, and I can't wait for the day. But, when I was a new mom of two and was forging friendships, I never expected to get left behind..
So, why write this? What purpose does it serve, right? Well, I think it's empowering for 'spectrum moms' (or at least this one) to step back and say, once in a while, that "I dreamed a dream in time gone by" and that this life is "so different now from what it seemed" it would be like back then. Because then, I can wake up and get back to living and a state of appreciating the blessings I have (which still includes these great friends).
Friday, November 5, 2010
Confusion now hath made its masterpiece
The more devastating aspect of WINK's diagnosis for me is that he probably has OCD (or a related anxiety disorder). I began noticing isolated incidents of odd behavior when he was a toddler. Small things, like stomping his feet four times between steps while going down the stairs, or crying if his seat belt wasn't pulled tightly through his car seat or was twisted (these could be compulsions). But I hoped it was a phase and began diligently looking for the slightest hint of an obsessive fear. As the years passed, I noted a few more examples of quirky behavior. I'd have to phrase things "correctly" at times or give a particular response- "yes" instead of "okay"- but I still didn't see evidence of anxiety or fear.
Until recently, that is. I think I figured out my WINK's fear. He has to be understood and he has to really understand what is said, what to do, what to expect at all times. This may seem logical. Of course he wants to be understood and to understand, everybody does. But WINK is paralyzed by uncertainty if he isn't given explicit instructions or if he can't follow a rule. WINK used one of his teacher's classroom books for a book report he turned in last week but he has yet to return the book to her. Why? She hasn't asked for it (!!!) and (on another day) it's too early because books go back to the library on Monday (it's not a library book...). He also can't make a decision. And I'm not talking about life and death decisions here. It took WINK forty minutes and a lot of sobbing to decide on how he wanted to sleep last night- under the top sheet or above it. Dad and I tried calming him in every way we could think of. It wasn't until I rephrased it and told him that scientists have these dilemmas all the time (and subsequently made it into a science experiment) that he stayed soothed and returned to bed.
This scares me in a way that SMILE's tantrums do not. There's a loopy kind of logic, a cause and effect, to SMILE's behavior. It's unpredictable but once an issue is figured out (he doesn't like to get wet) and a solution is found (put a poncho on him when it rains), that resolution is consistent. But my WINK...
Until recently, that is. I think I figured out my WINK's fear. He has to be understood and he has to really understand what is said, what to do, what to expect at all times. This may seem logical. Of course he wants to be understood and to understand, everybody does. But WINK is paralyzed by uncertainty if he isn't given explicit instructions or if he can't follow a rule. WINK used one of his teacher's classroom books for a book report he turned in last week but he has yet to return the book to her. Why? She hasn't asked for it (!!!) and (on another day) it's too early because books go back to the library on Monday (it's not a library book...). He also can't make a decision. And I'm not talking about life and death decisions here. It took WINK forty minutes and a lot of sobbing to decide on how he wanted to sleep last night- under the top sheet or above it. Dad and I tried calming him in every way we could think of. It wasn't until I rephrased it and told him that scientists have these dilemmas all the time (and subsequently made it into a science experiment) that he stayed soothed and returned to bed.
This scares me in a way that SMILE's tantrums do not. There's a loopy kind of logic, a cause and effect, to SMILE's behavior. It's unpredictable but once an issue is figured out (he doesn't like to get wet) and a solution is found (put a poncho on him when it rains), that resolution is consistent. But my WINK...
Wednesday, November 3, 2010
Divided we fall, WINK!
I feel good about a lot of the choices I've made as a mom, but the accomplishment at the summit of my pride mountain is the relationship I've helped nurture between WINK and SMILE. Dating back to my pregnancy with SMILE, I emphasized WINK's pending role as big brother. Before going into the hospital, I spread the word to family and friends that I wanted everyone to celebrate "WINK'S BIG BROTHER DAY" instead of shifting the attention to the new baby (it's not like an infant will know the difference, I reasoned). Whenever I talked to WINK about SMILE, I inserted "your" before the baby's name. And as SMILE grew, I reversed it ("SMILE, where's your WINK?"). Of course, Dad and I wanted to establish a bond between us and our boys (I still often insert "my" before their names when I call them), but we both felt strongly that nurturing their connection would be a gift to them both.
And it has been. My boys love each other and defend one another endlessly when one is being scolded at home. They hug and kiss every afternoon when they are reunited at the end of the school day and quickly name the other when asked to identify a best friend. Of course, they fight. They are five and seven year old boys, but hardly a truly critical, judgmental, mean word has passed between them.
That's why I was shocked this morning when WINK, sitting on the steps while I tied his shoe, declared "SMILE is weird." I wasn't even sure I had heard him correctly. "What?"
"Well, he is," WINK said defensively. "Why does he do that?" The veil of desensitization lifted and I realized SMILE was spinning and making repetitive sounds a few feet behind WINK. Oh.
"SMILE thinks he's being funny, Honey."
"But he's not. It's weird," WINK stated. The irony of this made me chuckle because WINK isn't exactly the coolest cube in the ice tray.
I immediately started thinking of worse case scenarios. Had one of WINK's classmates said something? Had WINK overheard one of SMILE's classmates? Or, worse of all, is WINK becoming a typical almost- eight- year- old in this area? Because, in all fairness, I understand that SMILE could be seen as a little...weird in the eyes of children (and uneducated adults, I might add). But...
"WINK," I said with a calm sigh. "I don't like that word and I don't want you to use that word when you are talking about your brother." He nodded and tried to lighten the mood in his typical overly goofy way. And I smiled and got my spectrum boys out the door...my mind buzzing with one question: What now?
And it has been. My boys love each other and defend one another endlessly when one is being scolded at home. They hug and kiss every afternoon when they are reunited at the end of the school day and quickly name the other when asked to identify a best friend. Of course, they fight. They are five and seven year old boys, but hardly a truly critical, judgmental, mean word has passed between them.
That's why I was shocked this morning when WINK, sitting on the steps while I tied his shoe, declared "SMILE is weird." I wasn't even sure I had heard him correctly. "What?"
"Well, he is," WINK said defensively. "Why does he do that?" The veil of desensitization lifted and I realized SMILE was spinning and making repetitive sounds a few feet behind WINK. Oh.
"SMILE thinks he's being funny, Honey."
"But he's not. It's weird," WINK stated. The irony of this made me chuckle because WINK isn't exactly the coolest cube in the ice tray.
I immediately started thinking of worse case scenarios. Had one of WINK's classmates said something? Had WINK overheard one of SMILE's classmates? Or, worse of all, is WINK becoming a typical almost- eight- year- old in this area? Because, in all fairness, I understand that SMILE could be seen as a little...weird in the eyes of children (and uneducated adults, I might add). But...
"WINK," I said with a calm sigh. "I don't like that word and I don't want you to use that word when you are talking about your brother." He nodded and tried to lighten the mood in his typical overly goofy way. And I smiled and got my spectrum boys out the door...my mind buzzing with one question: What now?
Tuesday, November 2, 2010
Moving Mountains
I woke up this morning to the sound of my little SMILE's sleepy "Good morning, Mommy" greeting. I opened my eyes, lifted my head from the pillow, and came face to face with my little man. He climbed up onto the bed as I peeled up the comforter to make room for him. He snuggled in close to me and squirmed as I bombarded his head and face with kisses. He flung his arm over his mouth and declared the "kiss store" was closed. This was my cue to feign horror and ask if there's a key, when will it open, is there a window, etc. I'm not sure when this started with us but we've been doing it for a while and he still giggles when we do it. I'd do just about anything to hear SMILE giggle.
Moments later, WINK came bounding into the room, jumping and flapping frantically in excitement. "Get over here," I yelled. He climbed onto the bed with no difficulty (Wow, he's getting so big!) and sprawled across me, SMILE, and our poor, startled dog. As he often does with the SLIGHTEST encouragement, WINK declared his love for everyone in that room. He's so grateful for every show of affection SMILE, Dad, and I rain down on him and, since DAD and I do it every chance we get and SMILE is surprisingly affectionate with his big bro, WINK is a pretty happy guy, indeed.
The rest of the morning- breakfast, getting dressed- went off without a hitch. Well, without unexpected hitches, anyway. Sure, SMILE declared pants choices 1 and 2 were "too soft." But Dad, invisible hero cape flying behind him, was armed with a no-fail 3rd option. WINK wanted candy and was thrown by my mommy meanness (how could I NOT give my child chocolate before school), but was assuaged by a promise of a treat when he gets home.
But somewhere between getting socks on "just right", wrestling with knots in shoelaces, and getting buckled in the backseat on the car, we arrived at school ON TIME but too late for the boys to go in the door they usually use. "Okay," I thought, "I'll just send them in through the cafeteria with the bus riders." I've done it before and the teachers have been wonderful about allowing me to walk through the room with them.
But, today, mountains moved. WINK and SMILE both looked up at me and declared they could get to their classrooms without help. Actually, WINK looked a little doubtful as he took a deep breath and set his little jaw in determination. SMILE, however, was the picture of confidence and refused even WINK's help. Of course, I watched from the door and darted in and through to the far side of the cafeteria when I saw SMILE drift to the left when he needed to turn to the right. But I just nudged his shoulder and he moved on without hesitation. I smiled at other moms as I ran back to my car and fought down the urge to go to the office. Could they send out a rescue crew to make sure WINK and SMILE made it without incident and weren't crying somewhere, miserably lost and confused, in that labyrinth of a school? I sat in my car, slowly drove off, and returned home. Should I call?
In the end, I did nothing. Because, today, mountains moved. And it's my job to let them.
Moments later, WINK came bounding into the room, jumping and flapping frantically in excitement. "Get over here," I yelled. He climbed onto the bed with no difficulty (Wow, he's getting so big!) and sprawled across me, SMILE, and our poor, startled dog. As he often does with the SLIGHTEST encouragement, WINK declared his love for everyone in that room. He's so grateful for every show of affection SMILE, Dad, and I rain down on him and, since DAD and I do it every chance we get and SMILE is surprisingly affectionate with his big bro, WINK is a pretty happy guy, indeed.
The rest of the morning- breakfast, getting dressed- went off without a hitch. Well, without unexpected hitches, anyway. Sure, SMILE declared pants choices 1 and 2 were "too soft." But Dad, invisible hero cape flying behind him, was armed with a no-fail 3rd option. WINK wanted candy and was thrown by my mommy meanness (how could I NOT give my child chocolate before school), but was assuaged by a promise of a treat when he gets home.
But somewhere between getting socks on "just right", wrestling with knots in shoelaces, and getting buckled in the backseat on the car, we arrived at school ON TIME but too late for the boys to go in the door they usually use. "Okay," I thought, "I'll just send them in through the cafeteria with the bus riders." I've done it before and the teachers have been wonderful about allowing me to walk through the room with them.
But, today, mountains moved. WINK and SMILE both looked up at me and declared they could get to their classrooms without help. Actually, WINK looked a little doubtful as he took a deep breath and set his little jaw in determination. SMILE, however, was the picture of confidence and refused even WINK's help. Of course, I watched from the door and darted in and through to the far side of the cafeteria when I saw SMILE drift to the left when he needed to turn to the right. But I just nudged his shoulder and he moved on without hesitation. I smiled at other moms as I ran back to my car and fought down the urge to go to the office. Could they send out a rescue crew to make sure WINK and SMILE made it without incident and weren't crying somewhere, miserably lost and confused, in that labyrinth of a school? I sat in my car, slowly drove off, and returned home. Should I call?
In the end, I did nothing. Because, today, mountains moved. And it's my job to let them.
Sunday, October 31, 2010
You Can't Beat the Logic...
While trick or treating, WINK looked up at my husband and I and asked, "Why do we say 'Trick or Treat'? People just give us candy so... where's the trick in that?"
Friday, October 29, 2010
Halloween Success!
SMILE is wearing his bat costume and has already posed for several very sinister and spooky "swooping down" pictures. The costume is actually a bit too small (the size listed on the costume is 7-9 so I was shocked) and my initial reaction was mild panic as I pulled the jumper over his shoulders and saw the length of the pants creep up from his ankles to mid calf. But SMILE loved it that way. Of course he did! It's comfy and confining for him. Thank God it worked out that way. If the costume had been roomy, the way I had intended, he might have not put it on. So, my little bat flew into his class, picking little wedgies as he ran, and I couldn't be prouder!
WINK is coming home for lunch today to change into his costume. He'll be dressed as a Noble Knight today. Very fitting, indeed.
WINK is coming home for lunch today to change into his costume. He'll be dressed as a Noble Knight today. Very fitting, indeed.
Thursday, October 28, 2010
My Little Fireman
SMILE went to the fire station today with his class. I was a chaperon, of course, because I anticipated a break down of some sort (I mean...there are SIRENS!!!). But SMILE was awesome! There was a tense moment while we were riding in the fire truck, sirens blaring, when he looked like he had sucked on a lemon. But he quickly adapted and was unshakable after that. He listened patiently to demonstrations, allowed himself to be hooked up to a heart monitor by an EMT, held the water hose, tried on the Fire Chief's coat. I was so proud. But the cutest part was seeing him run around with the flimsy plastic fireman helmet he wore, of course, over his hood. Hey, whatever works.
Tuesday, October 26, 2010
Approach with Caution?
I was on the play-yard at my sons' school the other day. SMILE and I were running late and WINK was due out of class any minute. In my rush, I forgot SMILE's lunchbox in the car. A third of the way down the path, SMILE looked up and stated, "Oh...umm Mommy, you forgot my lunchbox." He was calm, even giggled (as if to say, "oh, you silly silly mommy"), and I thought all would be well. But, well, it wasn't. Sure, I wanted to just turn around and get the lunchbox but we were running late and we had to get to "our spot" in the yard for pick-up before the students were dismissed.
As WINK ran out, I thought I was in the clear. I turned to my shrieking SMILE and cheerily urged him on back to the car, back to his lunchbox, back to his snack. He sobbed more. "Not to the car! I can't go back," he wailed. "You go get it, Mommy. PLEASE!"
I just stared at him for a moment, my hand resting on his shoulder, and let the problem sink in. He didn't care that he could still have his snack in the car, as he usually did. He needed to walk with the lunchbox because that had, evidently, become a ritual for him. I ran through my options. I looked toward the parking lot. No, since the parking lot was at the end of a trail, my car was way too far away for me to leave my boys unattended. Not to mention the very real possibility that, had I left, SMILE would have misinterpreted my absence and thought he was "lost" or that I had "forgotten" him. I tried reasoning with him, calmly talking between shrieks. He started pulling and pushing me. WINK kept asking what was wrong with SMILE. I told him I accidentally changed his routine and he's having a hard time right now. I could pick him up. No, he's too heavy. I could pull, drag, yell. No, absolutely not. I scanned the yard. No one I knew by name (new school) and no one made eye contact.
It took me twenty minutes to get SMILE out of the main yard. I finally got him to a point (inch by inch) on the path where he could see some yellow posts on the edge of the parking lot. I figured if I could get him to those, I could run to the car, grab the lunchbox, bring it back to him, and all would be well. I proposed the option to the tear-streaked little face that was looking up to me (begging me, I know, to figure this out). He said "yes" and the tears instantly stopped. I left my boys by the posts, sprinted to my car, and was back in under a minute. And all was well. SMILE laughed the entire time he ran through the (by then) vacant parking lot.
But...here's what I don't understand. SMILE wears a bright blue parka when it rains. He spins. He covers his ears. It's pretty obvious that there's something going on with the little man. Even if people don't think or know I am (he is) dealing with autism, it's clear that he's having an irrationally big reaction to something small. Why didn't anyone approach us? I'm not taking it personally. Really. I truly think that people probably felt helpless and didn't know what to do. But I'm just wondering why people feel embarrassed to offer help. I have been in the position of the observer before and I know I've felt that way. So, I've done nothing.
But not anymore.
As WINK ran out, I thought I was in the clear. I turned to my shrieking SMILE and cheerily urged him on back to the car, back to his lunchbox, back to his snack. He sobbed more. "Not to the car! I can't go back," he wailed. "You go get it, Mommy. PLEASE!"
I just stared at him for a moment, my hand resting on his shoulder, and let the problem sink in. He didn't care that he could still have his snack in the car, as he usually did. He needed to walk with the lunchbox because that had, evidently, become a ritual for him. I ran through my options. I looked toward the parking lot. No, since the parking lot was at the end of a trail, my car was way too far away for me to leave my boys unattended. Not to mention the very real possibility that, had I left, SMILE would have misinterpreted my absence and thought he was "lost" or that I had "forgotten" him. I tried reasoning with him, calmly talking between shrieks. He started pulling and pushing me. WINK kept asking what was wrong with SMILE. I told him I accidentally changed his routine and he's having a hard time right now. I could pick him up. No, he's too heavy. I could pull, drag, yell. No, absolutely not. I scanned the yard. No one I knew by name (new school) and no one made eye contact.
It took me twenty minutes to get SMILE out of the main yard. I finally got him to a point (inch by inch) on the path where he could see some yellow posts on the edge of the parking lot. I figured if I could get him to those, I could run to the car, grab the lunchbox, bring it back to him, and all would be well. I proposed the option to the tear-streaked little face that was looking up to me (begging me, I know, to figure this out). He said "yes" and the tears instantly stopped. I left my boys by the posts, sprinted to my car, and was back in under a minute. And all was well. SMILE laughed the entire time he ran through the (by then) vacant parking lot.
But...here's what I don't understand. SMILE wears a bright blue parka when it rains. He spins. He covers his ears. It's pretty obvious that there's something going on with the little man. Even if people don't think or know I am (he is) dealing with autism, it's clear that he's having an irrationally big reaction to something small. Why didn't anyone approach us? I'm not taking it personally. Really. I truly think that people probably felt helpless and didn't know what to do. But I'm just wondering why people feel embarrassed to offer help. I have been in the position of the observer before and I know I've felt that way. So, I've done nothing.
But not anymore.
Sunday, October 24, 2010
a Halloween blessing
WINK was asking if we had more Halloween decorations to use around the house (inspired, I'm sure, by a weekend at his grandma's totally spooked out house). DAD told him we have a little model house that glows that we could put on top of our entertainment center. "But," he added "...it's really not a Halloween decoration. It's more an autumn decoration. WINK then said, "That's okay because Fall is like God celebrating Halloween."
Thursday, October 21, 2010
A bad night with WINK
We are several steps behind in developing a treatment plan for WINK. The process is tedious and long and it just can't all happen quickly enough for me. His social progress- or lack of- makes me frantic to find help. He was diagnosed with Aspergers and OCD by the same institution that is currently providing behavioral services for SMILE. The BSC process has begun but progress is slow, unfortunately.
Last night was bad for WINK and I. He had a homework assignment in which he needed to pick 5 words from a list of 12 and write about a given topic (in this case, it was rescuing an animal). I hate this assignment and dread it every week because WINK can't do this simple step without analyzing his options for a staggering length of time. Now, if he were laid back about it and had too many ideas to choose from THAT HE ARTICULATED, I think I would be able to let him go. But, WINK shuts down like a little computer with too much input and conveys nothing but anxiety. So, week after week, I break down the assignment and we manage through it. But last night, WINK had PT after school and he took at least an hour to complete math work before starting the spelling homework (my mistake #1). So, he was already tired by the time he started and I was already frustrated because it was getting late and we had a multi-step, cannot ever be altered, routine for bedtime still looming. So, I told him to just pick ANY words from the list. He sat.
"WINK, seriously, ANY five words." (Mistake #2) I didn't make it into a game like I usually do. I wanted to skip that and just get it done.
"But I don't know what to pick."
After the third repetition of the above lines, his little lip was quivering and I made a real effort to remove any frustration from my voice.
"I know you're freaked out, WINK. But, honey, just pick any five words and I will sit here with you and we will think about sentences together. I know you are worrying about step #2 but you haven't done step #1 yet. Don't worry." HE picked 4. It took 20 minutes but, great. Just one more. And he COULDN'T do it!
And then, I blew up. I grabbed the paper and circled a 5th word. WINK cried because my sudden movement and my anger scared him, but also because I marked up his paper. Thankfully, a phone call from my best friend came in and I was able to go upstairs while WINK's dad took over.
This friend has stood by my side for 20 years and she knows me better than anyone. A friend like this is rare and I pray every day that WINK finds a friend like her. If I had been talking to anyone else, I the conversation would have stayed focused on my frustration. But because it was her, I went right to my disappointment with myself. "Of course, it was a human reaction," I remember saying, "but I don't get to indulge in that. I don't have the right to blow up at him because it hurts him so much more than it should." And that's another serious weight of having special needs kids.
But...the rewards of being an ASD mom do outweigh the strain. After hanging up, I ran downstairs and hugged WINK. He crawled into my lap and I kissed his hair and cheek between apologizing. I told him I was wrong for yelling. I don't have the right to lose it like that. I asked him if that was "cool or uncool" (which is a game played at his social skills group). He said "uncool" with his thumbs down. I promised I would try really hard to be "cool" (thumbs up) more often. He said, "It's okay. I forgive you...maybe." Then he disolved into gasping laughter as I pretend screeched, "What!" and attacked him with rib tickles.
And I woke up this morning intent on being a more "cool" mom for my boys because they're worth it.
Last night was bad for WINK and I. He had a homework assignment in which he needed to pick 5 words from a list of 12 and write about a given topic (in this case, it was rescuing an animal). I hate this assignment and dread it every week because WINK can't do this simple step without analyzing his options for a staggering length of time. Now, if he were laid back about it and had too many ideas to choose from THAT HE ARTICULATED, I think I would be able to let him go. But, WINK shuts down like a little computer with too much input and conveys nothing but anxiety. So, week after week, I break down the assignment and we manage through it. But last night, WINK had PT after school and he took at least an hour to complete math work before starting the spelling homework (my mistake #1). So, he was already tired by the time he started and I was already frustrated because it was getting late and we had a multi-step, cannot ever be altered, routine for bedtime still looming. So, I told him to just pick ANY words from the list. He sat.
"WINK, seriously, ANY five words." (Mistake #2) I didn't make it into a game like I usually do. I wanted to skip that and just get it done.
"But I don't know what to pick."
After the third repetition of the above lines, his little lip was quivering and I made a real effort to remove any frustration from my voice.
"I know you're freaked out, WINK. But, honey, just pick any five words and I will sit here with you and we will think about sentences together. I know you are worrying about step #2 but you haven't done step #1 yet. Don't worry." HE picked 4. It took 20 minutes but, great. Just one more. And he COULDN'T do it!
And then, I blew up. I grabbed the paper and circled a 5th word. WINK cried because my sudden movement and my anger scared him, but also because I marked up his paper. Thankfully, a phone call from my best friend came in and I was able to go upstairs while WINK's dad took over.
This friend has stood by my side for 20 years and she knows me better than anyone. A friend like this is rare and I pray every day that WINK finds a friend like her. If I had been talking to anyone else, I the conversation would have stayed focused on my frustration. But because it was her, I went right to my disappointment with myself. "Of course, it was a human reaction," I remember saying, "but I don't get to indulge in that. I don't have the right to blow up at him because it hurts him so much more than it should." And that's another serious weight of having special needs kids.
But...the rewards of being an ASD mom do outweigh the strain. After hanging up, I ran downstairs and hugged WINK. He crawled into my lap and I kissed his hair and cheek between apologizing. I told him I was wrong for yelling. I don't have the right to lose it like that. I asked him if that was "cool or uncool" (which is a game played at his social skills group). He said "uncool" with his thumbs down. I promised I would try really hard to be "cool" (thumbs up) more often. He said, "It's okay. I forgive you...maybe." Then he disolved into gasping laughter as I pretend screeched, "What!" and attacked him with rib tickles.
And I woke up this morning intent on being a more "cool" mom for my boys because they're worth it.
Wednesday, October 20, 2010
BSC, TSS, IEP...BYOB
Smile and I went to the park with his TSS (therapeutic staff support) and BSC (Behavioral Specialist Consultant- I THINK. This is the one acronym I can't wrap my mind around). My adorable, angel-faced, cutie has been showing his surly side with pride lately. He is very controlling and rigid in his expectations and it is sometimes impossible to interact with him without triggering a break down. Today was such a day and it started before we even got into the car. First, he yelled because we were going to a particular park that I mentioned by name. So, I quickly amended it and told him we were going to the park "by our house" (same park, by the way). Then he yelled at his TSS and BSC because he wanted to play with a silly spring toy and didn't want to get his coat on. So, I took the toy away and told him he needed to get his coat, sock, and shoes on. Once he did that, I promised, he could have his toy back. More high pitched screaming. He got his coat on but yelled at his TSS. I told him if he wanted to go to the park, he needed to say "sorry." He said "no." I counted. He screamed because I counted but he DID apologize. Then he asked for the toy. Sobbing and pleading ensued when I reminded him that our deal was that he needed to get his coat, socks, and shoes on. Somehow, I managed to stay calm throughout the entire ordeal and we were off.
At the park, SMILE ran around, laughing and cheery. I settled down on a bench to watch the scene unfold. I love the fall. The cool weather, the colorful leaves, and the sounds of my son being a typical kid. But then...his TSS suggested they play "Red Light Green Light" and SMILE started barking orders ("You go there. No! There. And you? You go there. No, no, no!") The BSC took over and told SMILE to stand by his TSS. He did. But then he realized that he wasn't going to be "the light" calling out the commands. More crying, more screaming.
A wonderful friend trekked out with her son so that SMILE's team could see him interact= or not interact- with a child he's known for four years. But they actually played very well together. That's typical for SMILE. He's social if he's given a lot of prompts and the game is structured and simple (too complex and his rigidity takes over). Two hours later, we packed our gang up and returned home. I set an agenda for SMILE (home to check on our dog, back in the car, pick up WINK, go to PT). All was fine. Until...I told him to leave his coat, socks, and shoes on. More screaming with some name calling ("You're cheating!). Ten minutes later, he got out of the car and I managed to get him in the house by promising him chocolate milk and a treat.
Frazzled, I said good-by to SMILE's team, put SMILE's socks and shoes back on (but he DID leave the coat on), and raced to WINK's school where we got there just in time to see him walk out of the building.
At the park, SMILE ran around, laughing and cheery. I settled down on a bench to watch the scene unfold. I love the fall. The cool weather, the colorful leaves, and the sounds of my son being a typical kid. But then...his TSS suggested they play "Red Light Green Light" and SMILE started barking orders ("You go there. No! There. And you? You go there. No, no, no!") The BSC took over and told SMILE to stand by his TSS. He did. But then he realized that he wasn't going to be "the light" calling out the commands. More crying, more screaming.
A wonderful friend trekked out with her son so that SMILE's team could see him interact= or not interact- with a child he's known for four years. But they actually played very well together. That's typical for SMILE. He's social if he's given a lot of prompts and the game is structured and simple (too complex and his rigidity takes over). Two hours later, we packed our gang up and returned home. I set an agenda for SMILE (home to check on our dog, back in the car, pick up WINK, go to PT). All was fine. Until...I told him to leave his coat, socks, and shoes on. More screaming with some name calling ("You're cheating!). Ten minutes later, he got out of the car and I managed to get him in the house by promising him chocolate milk and a treat.
Frazzled, I said good-by to SMILE's team, put SMILE's socks and shoes back on (but he DID leave the coat on), and raced to WINK's school where we got there just in time to see him walk out of the building.
Tuesday, October 19, 2010
Super cute!!
This is a day to celebrate! SMILE went to school in pants that are NOT one of his four favorite pairs. He has sensory issues so his drawers of jeans and cargo pants have gone unopened since the summer (of course he ruled out pants with buttons and zippers AFTER we went school shopping). But today, although he would not entertain buttons or zippers, he DID put on drawstring pants that were not sweats. He did whine, he did say they were too soft (he means not soft enough), but when he saw the shirt they would be paired with, he said it was "super cute" and he wanted to be super cute. SCORE!!!
Monday, October 18, 2010
Wow! Once again, I'm Humbled.
First of all, I want to say thank you to my friends who have either written comments, emails, or called just to send their love and support. You are appreciated more than you could know.
I observed SMILE in class today for a district wide activity during which families are free to see their little ones (because even when they are older, heck, they are still our little ones) in class. So, I got all dressed up in hip jeans, a fitted jacket, and a sassy scarf...I even put on mascara. I ran through the hall, paused just outside SMILE's classroom, straightened my jacket, and calmly walked in and perched on a chair that was meant for either 5 year-old children or dolls. I nodded politely at fellow moms. We all pointed to our kids.
And there he was in all his hooded glory. A quick note here: SMILE loves hoods. I first realized that they calm him down in new or stressful situations last winter. I noted that he participated in story times and sat more quietly if he wore a hood. But he hasn't needed a hood in quite a while, so it was complete luck or divine intervention when I not only put him in a hooded sweatshirt but THE hooded sweatshirt. My eyes stung with tears when I saw him and it was all I could do to not jump up and kiss his little apple cheeks completely off (Thank God SMILE loves hugs and still tolerates mushy kisses). I'm so proud of him. I was sitting next to a mom I've become friendly with. We've known each other for years, sort of, because her daughters and SMILE often went to the same story-times at a nearby Barnes and Nobles when they were still in Pre-K. But now, we see each other every day at drop off and pick up and she laughs with me as SMILE runs up to the school door in his blue, floor-length parka (if it's raining) or stares off while I try to get his attention. Today, I found out that she is studying to be an early childhood education teacher. Her students will be very lucky.
I took almost five pages of notes so I could pass on my observations to SMILE's TSS (therapeutic staff support). SMILE has transition issues and he needs continual prompting to follow directions. For example, the teacher told the students, at the end of an art project, to put away their crayons, put their papers in their "mailboxes" across the room, and then go sit on the carpet for the next activity. His classmates did as they were told, but SMILE sat at the table. It was just too much information and it needed to be doled out step by step as he was doing it. I know his teacher usually does exactly that but I did it today. Not surprisingly, when I didn't tell him the last step but, instead, asked him what the next step was, he said it and did it without any problem. That's common, as far as I understand, of children on the spectrum. They hear the steps but they can't deal with more than one step at a time.
But I noticed something about myself shortly after I returned home with SMILE and sat talking to his TSS. The reason I reported "my findings" is that I wanted to prove to her and myself that I'm a good mom. She humored me and listened but I had to control myself so I didn't hit her over the head with my notebook when she seemed unimpressed. But why would she be impressed by my notes? She already knows. I already know. I didn't need to scribble away like some sociologist. I didn't really learn anything new about my son. But I had to do it so his TSS would know that I'm smart and insightful and...that I didn't cause this to happen to my son.
So, I took my place on the couch and leafed through a magazine while a near-stranger played with my son . It's been about a month since SMILE'S TSS services started and I love his two TSS's and his BSC (the amount of acronyms is astounding!) but I struggle to not feel displaced in this process. So, I usually cuddle my dog, who wants nothing more than to bark at them and bite their ankles, because I can sympathize despite my gratitude.
It's all a humbling experience. It didn't help that WINK didn't bring his book report book home today. He didn't forget it. He put it on his desk, opened his book bag, did some other "kid packing up things," and it was gone when he went for it. I asked if he had told his teacher. He said "no." I asked "Why?" He said he felt silly. When I asked why, in the name of all that is good, he would feel silly asking the teacher for help if he can't find his book, he looked at me and said "because it's not like books can just walk away or disappear."
I actually gawked. "But it didn't disappear, WINK. You couldn't find it so you needed help. Maybe it fell on the floor?" He then went into a five minute dissertation about the exact positioning of the book and how it was impossible for the book to fall ("because gravity no longer applies?" I wanted to ask. BUT I DIDN'T.). I asked if another student could have packed it in his book bag by accident. He said that was not possible since all the students don't all take out the same books. SIGH! I asked if it was possible that someone could have POSSIBLY made a mistake. He said (and I quote), "Only if their eyes were tricking them." I gawked some more. But I really looked at his little face and saw that he's just as confused about this as I am and it broke my heart a bit. Finally, I mumbled something about putting a note for his teacher in his folder, started the car, and drove home. I made sure he got extra hugs once we got there, though. We both needed them.
I observed SMILE in class today for a district wide activity during which families are free to see their little ones (because even when they are older, heck, they are still our little ones) in class. So, I got all dressed up in hip jeans, a fitted jacket, and a sassy scarf...I even put on mascara. I ran through the hall, paused just outside SMILE's classroom, straightened my jacket, and calmly walked in and perched on a chair that was meant for either 5 year-old children or dolls. I nodded politely at fellow moms. We all pointed to our kids.
And there he was in all his hooded glory. A quick note here: SMILE loves hoods. I first realized that they calm him down in new or stressful situations last winter. I noted that he participated in story times and sat more quietly if he wore a hood. But he hasn't needed a hood in quite a while, so it was complete luck or divine intervention when I not only put him in a hooded sweatshirt but THE hooded sweatshirt. My eyes stung with tears when I saw him and it was all I could do to not jump up and kiss his little apple cheeks completely off (Thank God SMILE loves hugs and still tolerates mushy kisses). I'm so proud of him. I was sitting next to a mom I've become friendly with. We've known each other for years, sort of, because her daughters and SMILE often went to the same story-times at a nearby Barnes and Nobles when they were still in Pre-K. But now, we see each other every day at drop off and pick up and she laughs with me as SMILE runs up to the school door in his blue, floor-length parka (if it's raining) or stares off while I try to get his attention. Today, I found out that she is studying to be an early childhood education teacher. Her students will be very lucky.
I took almost five pages of notes so I could pass on my observations to SMILE's TSS (therapeutic staff support). SMILE has transition issues and he needs continual prompting to follow directions. For example, the teacher told the students, at the end of an art project, to put away their crayons, put their papers in their "mailboxes" across the room, and then go sit on the carpet for the next activity. His classmates did as they were told, but SMILE sat at the table. It was just too much information and it needed to be doled out step by step as he was doing it. I know his teacher usually does exactly that but I did it today. Not surprisingly, when I didn't tell him the last step but, instead, asked him what the next step was, he said it and did it without any problem. That's common, as far as I understand, of children on the spectrum. They hear the steps but they can't deal with more than one step at a time.
But I noticed something about myself shortly after I returned home with SMILE and sat talking to his TSS. The reason I reported "my findings" is that I wanted to prove to her and myself that I'm a good mom. She humored me and listened but I had to control myself so I didn't hit her over the head with my notebook when she seemed unimpressed. But why would she be impressed by my notes? She already knows. I already know. I didn't need to scribble away like some sociologist. I didn't really learn anything new about my son. But I had to do it so his TSS would know that I'm smart and insightful and...that I didn't cause this to happen to my son.
So, I took my place on the couch and leafed through a magazine while a near-stranger played with my son . It's been about a month since SMILE'S TSS services started and I love his two TSS's and his BSC (the amount of acronyms is astounding!) but I struggle to not feel displaced in this process. So, I usually cuddle my dog, who wants nothing more than to bark at them and bite their ankles, because I can sympathize despite my gratitude.
It's all a humbling experience. It didn't help that WINK didn't bring his book report book home today. He didn't forget it. He put it on his desk, opened his book bag, did some other "kid packing up things," and it was gone when he went for it. I asked if he had told his teacher. He said "no." I asked "Why?" He said he felt silly. When I asked why, in the name of all that is good, he would feel silly asking the teacher for help if he can't find his book, he looked at me and said "because it's not like books can just walk away or disappear."
I actually gawked. "But it didn't disappear, WINK. You couldn't find it so you needed help. Maybe it fell on the floor?" He then went into a five minute dissertation about the exact positioning of the book and how it was impossible for the book to fall ("because gravity no longer applies?" I wanted to ask. BUT I DIDN'T.). I asked if another student could have packed it in his book bag by accident. He said that was not possible since all the students don't all take out the same books. SIGH! I asked if it was possible that someone could have POSSIBLY made a mistake. He said (and I quote), "Only if their eyes were tricking them." I gawked some more. But I really looked at his little face and saw that he's just as confused about this as I am and it broke my heart a bit. Finally, I mumbled something about putting a note for his teacher in his folder, started the car, and drove home. I made sure he got extra hugs once we got there, though. We both needed them.
Sunday, October 17, 2010
My boys by any other name...
I've been trying to think of tag names for my boys so I don't have to use their real names. Finally, I think I've found my answer: WINK and SMILE. Yes, like the song. Years ago, my husband and I were given those nicknames by our college friends so it seems appropriate. But it's even more fitting because my 7 year old's (WINK) defining feature is his beautiful big eyes. My 5 year old gets out of trouble, and will one day make little girls swoon, with his SMILE.
My husband and I took the boys to a science fair today. WINK had been looking forward to it for weeks. There were a few breakdowns, but only a few. SMILE cried because he didn't want to launch the rocket DAD made. Then, later, he screamed in the hallway when DAD suggested going back to a room they had just left to retrieve something that had fallen off of a "bee hummer" one of the kids had made (a bee hummer is a contraption that buzzes when it is swung around by a string).
I wasn't there for the second tantrum, however. I was flying solo at a birthday party for a dear friend's daughter. It was a little strange being the only adult without children but it was a necessary move on my part. WINK would have most likely sobbed if forced to leave the science fair until the last atom had been counted (or something "science-y" like that) and SMILE, already tired from being at the fair, would have had a screaming tantrum the second he didn't win Hot Potato. Or maybe the game would have been played slightly differently from how he is used to playing it and the whole thing would have been deemed "stupid". My friends know WINK is a sweet little guy and they know, I hope, that they can't take it personally. But I still cringe. I know he can't help it, that the tantrums come from frustration due to his various delays and, in many cases, fatigue (very much like a toddler's outbursts) but...still. There's no way to make a room of mostly 7 year old and younger kids understand such strange behavior.
So, I'm cautious. Maybe more than I need to be. After all, it's possible both of them wouldn't have "tantrumed" (verb) at all. But I spend my days anticipating the next problem or obstacle for my boys and I think, this time, I made the right call.
My husband and I took the boys to a science fair today. WINK had been looking forward to it for weeks. There were a few breakdowns, but only a few. SMILE cried because he didn't want to launch the rocket DAD made. Then, later, he screamed in the hallway when DAD suggested going back to a room they had just left to retrieve something that had fallen off of a "bee hummer" one of the kids had made (a bee hummer is a contraption that buzzes when it is swung around by a string).
I wasn't there for the second tantrum, however. I was flying solo at a birthday party for a dear friend's daughter. It was a little strange being the only adult without children but it was a necessary move on my part. WINK would have most likely sobbed if forced to leave the science fair until the last atom had been counted (or something "science-y" like that) and SMILE, already tired from being at the fair, would have had a screaming tantrum the second he didn't win Hot Potato. Or maybe the game would have been played slightly differently from how he is used to playing it and the whole thing would have been deemed "stupid". My friends know WINK is a sweet little guy and they know, I hope, that they can't take it personally. But I still cringe. I know he can't help it, that the tantrums come from frustration due to his various delays and, in many cases, fatigue (very much like a toddler's outbursts) but...still. There's no way to make a room of mostly 7 year old and younger kids understand such strange behavior.
So, I'm cautious. Maybe more than I need to be. After all, it's possible both of them wouldn't have "tantrumed" (verb) at all. But I spend my days anticipating the next problem or obstacle for my boys and I think, this time, I made the right call.
Saturday, October 16, 2010
Hello
I had never really considered blogging before now. Who would want to read about my laments, challenges, and concerns regarding my boys, both recently diagnosed with ASDs? But then...I thought I would. I mean, if I weren't me and I needed something to laugh about, cry over, to help me see I wasn't alone. Because this does feel lonely, even with a great circle of friends, if your kids are the only ones screaming, spinning, or flapping and you're the only mom obsessing over which pants your five year old will agree to wear.
Yep,as a mom of spectrum kids, I find myself in sticky situations (a.k.a. "pickles"- both sour and sweet) all the time. Play dates can be gruesome, parents of "typical" children gawk in disbelief and fear, and everybody from cashiers to great uncles twice removed has an opinion that is only sometimes marginally helpful. I get yelled at, pushed, and hit by the very children I am trying to help, nurture, and soothe. And although I know better, I sometimes feel like a failure.
But then, somewhere between PTO meetings and IEP reviews, after TSS time and physical therapy, something wonderful happens every day. Small things, tiny, really. The kind of stuff parents with typical kids take for granted. My 5-year old will accept a change in plans or tolerate a spot of bubble solution on his shirt. My 7 year old will play with a classmate for a few minutes more than the week before or he'll apologize for something he said because he finally understands why it's rude. And for a moment, life is blessedly ordinary.
But the truth is that it's not. It's extra-ordinary. My boys smile every day despite knowing, deep down, they are different. And they fight against it in countless ways every day. So, I fight too. And in addition to feeling frustrated, tired, and overwhelmed, I'm proud and inspired... every day.
Yep,as a mom of spectrum kids, I find myself in sticky situations (a.k.a. "pickles"- both sour and sweet) all the time. Play dates can be gruesome, parents of "typical" children gawk in disbelief and fear, and everybody from cashiers to great uncles twice removed has an opinion that is only sometimes marginally helpful. I get yelled at, pushed, and hit by the very children I am trying to help, nurture, and soothe. And although I know better, I sometimes feel like a failure.
But then, somewhere between PTO meetings and IEP reviews, after TSS time and physical therapy, something wonderful happens every day. Small things, tiny, really. The kind of stuff parents with typical kids take for granted. My 5-year old will accept a change in plans or tolerate a spot of bubble solution on his shirt. My 7 year old will play with a classmate for a few minutes more than the week before or he'll apologize for something he said because he finally understands why it's rude. And for a moment, life is blessedly ordinary.
But the truth is that it's not. It's extra-ordinary. My boys smile every day despite knowing, deep down, they are different. And they fight against it in countless ways every day. So, I fight too. And in addition to feeling frustrated, tired, and overwhelmed, I'm proud and inspired... every day.
Subscribe to:
Posts (Atom)