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.
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