I had a temper tantrum yesterday. Actually, I had two. DAD was the unlucky recipient of the first. I cried, I left to run errands, I felt better.
The second was aimed at the boys' temporary BSC (their usual one is on maternity leave). I like him, I really do. He's an older man, new to this career, and very gentle with WINK and SMILE. But...his main responsibility is to write a new treatment plan for each of my boys. This document is vitally important because it states all the problem areas each boy has, goals for each problem, and how the goals will be obtained. For example, one of SMILE's problems is that he has trouble communicating with precise language. This is evidenced by statements like "I don't like it" (what's "it"). This leads to tantrums when DAD and I don't understand what is bothering him. Once SMILE is too much in his head, he has no ability to regulate his emotions. The goal is to help him use more precise language.
Mr. BSC had never done one before. He said, two weeks ago, that he would be relying heavily on my input to shape the plans. After all, he went on, I'm the expert and no one knows WINK and SMILE better. I have to say, I enjoyed the promotion. I preened my feathers a bit. But I didn't expect to write them. I've clocked ELEVEN hours with Mr. BSC, DAD was present for three of them, over the past two weeks. Every time I scribbled a note on my draft, he hungrily copied it down like it was wisdom incarnate. I talked, he said it was great, and EVERY TIME he looked at me and said, "Now how do we write that?"
!!!!
So...I wrote them. Rewrote them. And just for fun, wrote them again. TIMES TWO. While scribbling a map of ideas, this time for WINK, I saw MR. BSC craning his neck to copy down my notes. I put my pen down and said (a-hem): "Okay, in an effort to communicate precisely and attempt to regulate my emotions so I don't have a tantrum, I'm going to tell you how this will go. My husband and I are going to scribble a list of issues we want addressed in WINK's plan. Just to get our ideas on paper. We're going to flesh out each point. So that it doesn't get done wrong (!), I don't want you to write anything until we are done."
Ugh. Poor MR. BSC. He walked into the lion's den yesterday. He took the reprimand with grace, sat with his hands folded, in fact, and waited. By the end of the day, my fourth with the BSC, the three of us did bang out and finalize two great treatment plans that I'm hopeful will change the direction of this process and make a huge difference.
But I'm very tired now. I've brought my kids to speech, occupational, and physical therapy for over a year. At most of these facilities, there are children with various degrees of different disabilities, some screaming for up to an hour at a time (at physical therapy), and I've done it without complaining
...much. Actually writing my children's treatment plans, however, didn't give me the bout of empowerment I expected it to. Pouring out my perspective is nothing new. Wrestling all my ideas and wrangling them into a strict format, beating them into submission, isn't new either since I've been writing since my teens. But taking a clinical look at my boys? Being asked to see their disorders first and them second for eleven hours? I'm still hurting from the growing pains.
Sunday, November 20, 2011
Tuesday, November 8, 2011
...And then other times it's so easy
SMILE's sleep deprived EEG happened today. Now, just to recap, this is the first of several tests that will rule out or confirm several possible causes for SMILE's erratic movements. The purpose for the EEG is to see if he has a seizure disorder. I suspect the results will be normal. If the results of his MMR (which will detect tumors or physical malformations) are also clear, SMILE will likely get a firm Tourettes diagnosis.
But here's the fabulous part. My little SMILE, who is only six years old, rocked his EEG. Dad and I couldn't put him to bed until midnight and then we had to drag him out of bed at 5:00 A.M. I expected him to be a surly beast but, except for the first ten minutes after his wake-up call, he was an angel. Once we got to the hospital four hours later, he endured 30 minutes of prodding before the test began. I mistakenly thought a technician would stick four wires to SMILE's forehead while he sat in a chair and, bing bang bop, he's be done with the test in minutes. Not so. SMILE had to lie in a bed with his arms at his side while over twenty wires were glued all over his head. Then he had to do deep breathing for four minutes, try to relax with strobe lights going off in front of his face, answer questions, and then (the worst by far) do nothing in intervals that lasted another 30 minutes total. My little star didn't complain once.
WINK had a great day, too. He stayed with an extraordinary friend and spent the morning playing video games with her eight year old son. At one point, my friend heard WINK yell, "You want a piece of me?!" Priceless and perfectly age appropriate. Once we all got home, WINK helped DAD cut down some tree limbs on our property that were damaged in a recent storm. My usually quick to tire little boy morphed into a lumberjack. He helped DAD hold the saw and carried away tree limbs half his height to a clearing DAD had made. After about 45 minutes, the little stinker demanded a paycheck but he was as proud of himself as DAD and I were of him. I think he took some very important steps today.
They both did. And DAD and I took a few steps back. And that, too, is a very good thing.
But here's the fabulous part. My little SMILE, who is only six years old, rocked his EEG. Dad and I couldn't put him to bed until midnight and then we had to drag him out of bed at 5:00 A.M. I expected him to be a surly beast but, except for the first ten minutes after his wake-up call, he was an angel. Once we got to the hospital four hours later, he endured 30 minutes of prodding before the test began. I mistakenly thought a technician would stick four wires to SMILE's forehead while he sat in a chair and, bing bang bop, he's be done with the test in minutes. Not so. SMILE had to lie in a bed with his arms at his side while over twenty wires were glued all over his head. Then he had to do deep breathing for four minutes, try to relax with strobe lights going off in front of his face, answer questions, and then (the worst by far) do nothing in intervals that lasted another 30 minutes total. My little star didn't complain once.
WINK had a great day, too. He stayed with an extraordinary friend and spent the morning playing video games with her eight year old son. At one point, my friend heard WINK yell, "You want a piece of me?!" Priceless and perfectly age appropriate. Once we all got home, WINK helped DAD cut down some tree limbs on our property that were damaged in a recent storm. My usually quick to tire little boy morphed into a lumberjack. He helped DAD hold the saw and carried away tree limbs half his height to a clearing DAD had made. After about 45 minutes, the little stinker demanded a paycheck but he was as proud of himself as DAD and I were of him. I think he took some very important steps today.
They both did. And DAD and I took a few steps back. And that, too, is a very good thing.
Tuesday, November 1, 2011
Sometimes it's hard to smile
I'm a reasonably positive person. I think I'm a realist, but a realist with rose-colored glasses. I accentuate the positive a lot, but I have to say that WINK drives me hair-pulling-out crazy sometimes. And...in ways that SMILE does not.
It's hard to say why that is. I think I understand SMILE's autism more than WINK's aspergers. If SMILE gets upset and tantrums, it's because I've done something "wrong." I've forgotten to pack a snack, I sprang a third stop at a store on him when I said there would only be two, or I've said something that he's wildly misinterpreted or taken too much to heart. The point is, when SMILE tantrums I know two things for certain: I've broken a rule and I know how to avoid it in the future (or at least prepare for it). WINK, on the other hand...
His tantrums are just as severe and sudden (more on that in a while), but the causes, the inciting incidents, are less tangible and so easy to miss. SMILE is rule based. Those rules are black and white. Break them at your own risk. WINK, however, is a concrete thinker, very literal, with how he takes in information and how he responds to information. So, although communicating with him can be illuminating and hysterically funny, it can be exhausting and exasperating as well.
Let me give an example: The other day, WINK brought home a test with a very low grade due to an essay question he answered incorrectly. I asked him if his teacher had read the directions to the class during the test. He said no. I dropped the topic for a few minutes so he wouldn't feel overwhelmed. When I asked him about the test again, I started the conversation by saying,
"Okay, Mrs. (Blank) didn't read the directions, right."
"Yeah she did," he said in a tone that inferred many flavors of stupidity.
"But you said she didn't read the directions during the test."
"She didn't."
(Sigh) "When did Mrs. (Blank) read the directions?"
"Before the test."
And there it is. Most people fill in the blanks when they are in a conversation and most people go to the next logical step on their own. If I tell WINK to find his shoes because we are running late, he should know that I also want him to put them on. He doesn't. The answer to my initial question, did his teacher read the directions during the test, should have been "yes" because when she read them wasn't really important. What I wanted to know was if she had read them at all. But, to WINK, he gave me the correct answer to the question asked. The reason WINK scored so poorly on the essay was because he wrote about the wrong character. The question was very clearly stated, but because all of the directions were read at once, WINK forgot the particulars of the essay question when he started writing on a different piece of paper. I asked him if he had reread the question. He said "no." When I asked "why" (while omitting the "by God" part), he said, "I didn't think of it and Mrs. (Blank) didn't tell me to."
So, in all fairness, I have to ask myself what are DAD, WINK's teachers, and I supposed to do with that? We met with Mrs. (Blank), a wonderful and compassionate teacher, today. She is eager to hear our suggestions and desperately wants to figure out a way to, in her words, help WINK show what he knows. But none of us want to spoon feed WINK information and give him the false security that people will continue to do so because he has Aspergers. I know my son, and she knows her student. WINK is a strong candidate for "learned helplessness," and allowing him to believe that there will always be someone to find a way around any obstacle for him, will only be a disservice. Of course, I'm there! But he's too acutely aware of it. The answer is that he needs to start self-advocating for what he needs. But that's so much more easily said than done for him, a little boy who is petrified to look silly.
Ugh! My heart goes out to my little man. This has to be confusing for him. It's just so frustrating to watch him say or do, or not say or do, what he should, but doesn't, know is right. He's almost nine years old and in many ways I still need to guide him like a toddler when it comes to appropriate interpersonal communication. He knows rules. He knows not to lie or call someone a bad name. But he doesn't understand abstract ideas like why people are sad at funerals or why he can't ask "Can we go soon?" out loud in the middle of a party. I'm ashamed to say it but, as he's gotten older, I've struggled not to say "What's wrong with you?" more and more.
But I also know that this is the time that he needs me and DAD to fake understanding all this the most. This time will make or break my son's confidence and I feel sick whenever I think about the challenges ahead. He may face bullies but I refuse to be one of them. But, I have to say, it's so easy to get angry at him.
I mentioned that WINK's tantrums are just as severe as SMILE's. But what is horribly unfortunate for my beautiful WINK is that he cries when he tantrums. His little brother rages and those screams demand attention and a response from the people around him to change, to make it better. But WINK's crying suggests weakness to even enlightened, well-read observers and the burden to change, to "suck it up," remains his. I don't want it to be that way. I want to keep the idea in my head that WINK, as with all sensitive people, will be so easy to crush with an unkind word so that I am as careful as I need to be at all times. So far, DAD and I are doing a good job. The hugs and the praise we give both our boys far outweigh our own temper tantrums.
But it is getting harder.
It's hard to say why that is. I think I understand SMILE's autism more than WINK's aspergers. If SMILE gets upset and tantrums, it's because I've done something "wrong." I've forgotten to pack a snack, I sprang a third stop at a store on him when I said there would only be two, or I've said something that he's wildly misinterpreted or taken too much to heart. The point is, when SMILE tantrums I know two things for certain: I've broken a rule and I know how to avoid it in the future (or at least prepare for it). WINK, on the other hand...
His tantrums are just as severe and sudden (more on that in a while), but the causes, the inciting incidents, are less tangible and so easy to miss. SMILE is rule based. Those rules are black and white. Break them at your own risk. WINK, however, is a concrete thinker, very literal, with how he takes in information and how he responds to information. So, although communicating with him can be illuminating and hysterically funny, it can be exhausting and exasperating as well.
Let me give an example: The other day, WINK brought home a test with a very low grade due to an essay question he answered incorrectly. I asked him if his teacher had read the directions to the class during the test. He said no. I dropped the topic for a few minutes so he wouldn't feel overwhelmed. When I asked him about the test again, I started the conversation by saying,
"Okay, Mrs. (Blank) didn't read the directions, right."
"Yeah she did," he said in a tone that inferred many flavors of stupidity.
"But you said she didn't read the directions during the test."
"She didn't."
(Sigh) "When did Mrs. (Blank) read the directions?"
"Before the test."
And there it is. Most people fill in the blanks when they are in a conversation and most people go to the next logical step on their own. If I tell WINK to find his shoes because we are running late, he should know that I also want him to put them on. He doesn't. The answer to my initial question, did his teacher read the directions during the test, should have been "yes" because when she read them wasn't really important. What I wanted to know was if she had read them at all. But, to WINK, he gave me the correct answer to the question asked. The reason WINK scored so poorly on the essay was because he wrote about the wrong character. The question was very clearly stated, but because all of the directions were read at once, WINK forgot the particulars of the essay question when he started writing on a different piece of paper. I asked him if he had reread the question. He said "no." When I asked "why" (while omitting the "by God" part), he said, "I didn't think of it and Mrs. (Blank) didn't tell me to."
So, in all fairness, I have to ask myself what are DAD, WINK's teachers, and I supposed to do with that? We met with Mrs. (Blank), a wonderful and compassionate teacher, today. She is eager to hear our suggestions and desperately wants to figure out a way to, in her words, help WINK show what he knows. But none of us want to spoon feed WINK information and give him the false security that people will continue to do so because he has Aspergers. I know my son, and she knows her student. WINK is a strong candidate for "learned helplessness," and allowing him to believe that there will always be someone to find a way around any obstacle for him, will only be a disservice. Of course, I'm there! But he's too acutely aware of it. The answer is that he needs to start self-advocating for what he needs. But that's so much more easily said than done for him, a little boy who is petrified to look silly.
Ugh! My heart goes out to my little man. This has to be confusing for him. It's just so frustrating to watch him say or do, or not say or do, what he should, but doesn't, know is right. He's almost nine years old and in many ways I still need to guide him like a toddler when it comes to appropriate interpersonal communication. He knows rules. He knows not to lie or call someone a bad name. But he doesn't understand abstract ideas like why people are sad at funerals or why he can't ask "Can we go soon?" out loud in the middle of a party. I'm ashamed to say it but, as he's gotten older, I've struggled not to say "What's wrong with you?" more and more.
But I also know that this is the time that he needs me and DAD to fake understanding all this the most. This time will make or break my son's confidence and I feel sick whenever I think about the challenges ahead. He may face bullies but I refuse to be one of them. But, I have to say, it's so easy to get angry at him.
I mentioned that WINK's tantrums are just as severe as SMILE's. But what is horribly unfortunate for my beautiful WINK is that he cries when he tantrums. His little brother rages and those screams demand attention and a response from the people around him to change, to make it better. But WINK's crying suggests weakness to even enlightened, well-read observers and the burden to change, to "suck it up," remains his. I don't want it to be that way. I want to keep the idea in my head that WINK, as with all sensitive people, will be so easy to crush with an unkind word so that I am as careful as I need to be at all times. So far, DAD and I are doing a good job. The hugs and the praise we give both our boys far outweigh our own temper tantrums.
But it is getting harder.
Tuesday, October 25, 2011
Why do I do this to myself?
Six days. I have been worrying myself sick for six days, mentally preparing arguments for every situation I thought possible, since SMILE's teacher requested a meeting. I'll call her Mrs. T. There was the "I think he should be in a learning support classroom" argument, the "SMILE's tics are too much of a distraction" argument, and the dreaded "kids are teasing him" revelation. I read up on IDEA (individuals with disabilities act), ready to preach about my son's right to an equal education in the least restrictive environment (mainstream classes in SMILE's case) as long as he is striving academically. I was ready to suggest mediation sessions between the parents of SMILE's classmates and myself because I was sure some of them must have voiced concerns about their children's education being thwarted by the presence of my autistic twitchy son. I was armed with grandiose ideas of what it means to be a teacher and I was ready to blast Mrs. T. with the challenge to do her job.
But none of that happened. SMILE's teacher, along with his speech teacher, wanted to sit down with DAD and I to discuss how well he's doing.
Excuse me? I know he's doing well, better than well. But...oh my gosh! They know it too?
Now, that's not to say that the meeting was a complete ode to SMILE. He's made a lot of progress since the beginning of the year, accepting more responsibility and playing at recess, but there's still farther to go. The true focus of the meeting was to discuss what I can do to help SMILE mature.
Oh. Mrs. T sited some of the problems she had earlier in the year. Turns out, that my little SMILE used to plop his bookbag on his desk and wait for his teacher to unpack his books and folder. At the end of the day, he'd whine that he couldn't get his things to fit back in his bag. Now, she beamed, he does it by himself. She asked about home. "When SMILE sits down to do his homework...?"
"...I unpack his bag and take his work out of his folder." I think I actually hung my head.
Mrs. T laughed and asked that I work with her to help SMILE develop more independence. I vowed that I would.
No sooner than we all left the meeting, however, Mrs T collected SMILE from the library where he had been waiting. I walked over and asked if he remembered where the book he had been reading belonged on the shelf. At the first sign of frustration, I asked if he wanted me to put it away for him. He said "yes."
"OOH!" I grunted and made a face at the two teachers. "Sorry!"
But none of that happened. SMILE's teacher, along with his speech teacher, wanted to sit down with DAD and I to discuss how well he's doing.
Excuse me? I know he's doing well, better than well. But...oh my gosh! They know it too?
Now, that's not to say that the meeting was a complete ode to SMILE. He's made a lot of progress since the beginning of the year, accepting more responsibility and playing at recess, but there's still farther to go. The true focus of the meeting was to discuss what I can do to help SMILE mature.
Oh. Mrs. T sited some of the problems she had earlier in the year. Turns out, that my little SMILE used to plop his bookbag on his desk and wait for his teacher to unpack his books and folder. At the end of the day, he'd whine that he couldn't get his things to fit back in his bag. Now, she beamed, he does it by himself. She asked about home. "When SMILE sits down to do his homework...?"
"...I unpack his bag and take his work out of his folder." I think I actually hung my head.
Mrs. T laughed and asked that I work with her to help SMILE develop more independence. I vowed that I would.
No sooner than we all left the meeting, however, Mrs T collected SMILE from the library where he had been waiting. I walked over and asked if he remembered where the book he had been reading belonged on the shelf. At the first sign of frustration, I asked if he wanted me to put it away for him. He said "yes."
"OOH!" I grunted and made a face at the two teachers. "Sorry!"
Saturday, October 22, 2011
Ummm...When did THAT happen?
So, yeah, I know WINK's almost nine. Sure, theoretically, I know he's not a baby. But, up until very recently, he was still my baby.
But now......WINK...has...a crush! On a real girl, not a celebrity. AND SHE'S CUTE! AND SHE'S REALLY NICE. And...I think she likes him back.
Agh!
Now, I'm sure every mother dreads this rite of passage and mourns this undeniable evidence that, someday, her little boy will let some temptress (a-hem, I mean sweet young lady), steal his heart (ummm...I mean fill his heart, or complete him, or something like that), and usurp dear old mom. When WINK was in kindergarten, there was a little girl who acted much older than her age. She kissed WINK on the mouth right in front of me and, when I startled, she said, "I'm sorry...he's just so hot!" WINK turned to me as we rushed out of the school and asked, "Mommy, why did she say I'm hot?" I tried my hardest not to laugh, and said, "She just thinks it's really warm in the classroom."
But WINK's older now and he's not an innocent five year old anymore. He's an innocent (almost) nine year old who tragically wears his heart on the outside. He's been trying so hard to master how his peers talk and to learn about their social cues. But...liking a girl and knowing how to act is a new dimension. Just tonight, WINK made a hugely inappropriate joke at dinner but he had no idea why it was wrong. SMILE was joking around and said "like pee-pee" instead of "like maybe" while singing the title sequence of a kids' show. WINK, laughing, said, "Okay...I'll pull down my pants and show you my..."
"Whoa, whoa, WHOA! WINK, you can't say that, honey."
"But I'm being funny."
Oh boy. So...I guess DAD and I need to think about discussing puberty issues with our little guy. Aspergers will present some unique challenges, but I think I'm mostly feeling like any other mom right now. I know he's only eight...almost nine...and I'll have many more years with him at home. But I think I'm getting my first glimpse of WINK as a...eek!...man. I see it in his slightly more angular face and his slightly aloof stance. This is going to take a lot to get used to. Maybe I'll have DAD call his mom. She probably needs an "I love you" from her little boy as much as I do.
But now......WINK...has...a crush! On a real girl, not a celebrity. AND SHE'S CUTE! AND SHE'S REALLY NICE. And...I think she likes him back.
Agh!
Now, I'm sure every mother dreads this rite of passage and mourns this undeniable evidence that, someday, her little boy will let some temptress (a-hem, I mean sweet young lady), steal his heart (ummm...I mean fill his heart, or complete him, or something like that), and usurp dear old mom. When WINK was in kindergarten, there was a little girl who acted much older than her age. She kissed WINK on the mouth right in front of me and, when I startled, she said, "I'm sorry...he's just so hot!" WINK turned to me as we rushed out of the school and asked, "Mommy, why did she say I'm hot?" I tried my hardest not to laugh, and said, "She just thinks it's really warm in the classroom."
But WINK's older now and he's not an innocent five year old anymore. He's an innocent (almost) nine year old who tragically wears his heart on the outside. He's been trying so hard to master how his peers talk and to learn about their social cues. But...liking a girl and knowing how to act is a new dimension. Just tonight, WINK made a hugely inappropriate joke at dinner but he had no idea why it was wrong. SMILE was joking around and said "like pee-pee" instead of "like maybe" while singing the title sequence of a kids' show. WINK, laughing, said, "Okay...I'll pull down my pants and show you my..."
"Whoa, whoa, WHOA! WINK, you can't say that, honey."
"But I'm being funny."
Oh boy. So...I guess DAD and I need to think about discussing puberty issues with our little guy. Aspergers will present some unique challenges, but I think I'm mostly feeling like any other mom right now. I know he's only eight...almost nine...and I'll have many more years with him at home. But I think I'm getting my first glimpse of WINK as a...eek!...man. I see it in his slightly more angular face and his slightly aloof stance. This is going to take a lot to get used to. Maybe I'll have DAD call his mom. She probably needs an "I love you" from her little boy as much as I do.
Wednesday, October 12, 2011
"You've got to be kidding! Another spectrum?"
It's almost conclusive. My little SMILE has a tic disorder. According to his neurologist- I can't believe my 6 year old has a neurologist- SMILE's vocal and motor simple tics (grunting and movements that involve one or two muscle groups) suggest Tourette's syndrome. His complex tics, those involving movements of several muscles at the same time, may be indicative of a secondary issue, however. Turns out that Tourette's is one tic disorder on, you guessed it, a spectrum of tic disorders. What does that mean? SMILE may have something called chorea disease. People with chorea experience movements that jump from one muscle group to another (like SMILE's head jerks that lead to shoulder shrugs) so that it loosely resembles a dance ("chorea"= "dance", derived from Greek).
So...now what? Well, blood tests need to be done to rule out infection and toxic levels of copper in his system. An MRI of his brain with sedation is in SMILE's future to rule out a malformation or physical cause (i.e. benign tumor). Then a sleep-deprived EEG to rule out a seizure disorder. Finally, some genetic testing to see if there are any more surprises waiting to surface. If everything comes back unremarkable, then Tourettes is causing all the movements. So...if I understand this correctly, SMILE has Tourettes and maybe another movement disorder. Or else, he just has a really bad case of Tourettes.
So...now what? Well, blood tests need to be done to rule out infection and toxic levels of copper in his system. An MRI of his brain with sedation is in SMILE's future to rule out a malformation or physical cause (i.e. benign tumor). Then a sleep-deprived EEG to rule out a seizure disorder. Finally, some genetic testing to see if there are any more surprises waiting to surface. If everything comes back unremarkable, then Tourettes is causing all the movements. So...if I understand this correctly, SMILE has Tourettes and maybe another movement disorder. Or else, he just has a really bad case of Tourettes.
Friday, October 7, 2011
A Morning with William Stillman
I recently had the amazing opportunity to attend a seminar given by William Stillman. Mr. Stillman has been dubbed the Autism Whisperer for his ability to understand the needs of people on the spectrum and his gift for communicating those needs to others. His experience? He has Aspergers.
Within minutes, I knew that I had found my new guru. His number one "golden rule" when approaching someone with autism is to "assume intelligence." I love that. He went on to describe people on the spectrum as "inherently gentle and exquisitely sensitive." He talked about the stereotypical behaviors most often seen- yelling, hitting, biting, crying, etc- and explained that these behaviors have NOTHING to do with autism. They are reactions to not being understood and being unable to communicate in a way that allows others to readily understand them. This rang true for me. I have always believed that SMILE's actions are not about SMILE being SMILE. I've known that he is frustrated. I've learned to listen to my little man when he says "no." I've learned to slow things down for both my boys to give them more processing time, a change that Mr. Stillman said is a "compassionate modification."
When the seminar was over, I walked over to meet Mr. Stillman. He had said that he is intuitive and can feel things by meeting a child or seeing a picture. He never asks to see diagnoses or professional files. I showed him a picture of my WINK and SMILE hugging. He said, immediately, that he was drawn to WINK's picture (makes sense, since WINK has Aspergers). He said he is very funny, a little performer and comedian, and that he may be in the entertainment field. I laughed and he assured me this was true. He asked if I had ever considered putting him in a play. I smiled and said that, ironically, I had just taken my boys to a workshop held by a local children's theater company earlier in the week. He looked at me and smiled. "Interesting," he said. After a few more moments, he told me to trust my mother's instinct going forward. Then he added, before releasing my hand, "You already do. I'm just validating it."
Within minutes, I knew that I had found my new guru. His number one "golden rule" when approaching someone with autism is to "assume intelligence." I love that. He went on to describe people on the spectrum as "inherently gentle and exquisitely sensitive." He talked about the stereotypical behaviors most often seen- yelling, hitting, biting, crying, etc- and explained that these behaviors have NOTHING to do with autism. They are reactions to not being understood and being unable to communicate in a way that allows others to readily understand them. This rang true for me. I have always believed that SMILE's actions are not about SMILE being SMILE. I've known that he is frustrated. I've learned to listen to my little man when he says "no." I've learned to slow things down for both my boys to give them more processing time, a change that Mr. Stillman said is a "compassionate modification."
When the seminar was over, I walked over to meet Mr. Stillman. He had said that he is intuitive and can feel things by meeting a child or seeing a picture. He never asks to see diagnoses or professional files. I showed him a picture of my WINK and SMILE hugging. He said, immediately, that he was drawn to WINK's picture (makes sense, since WINK has Aspergers). He said he is very funny, a little performer and comedian, and that he may be in the entertainment field. I laughed and he assured me this was true. He asked if I had ever considered putting him in a play. I smiled and said that, ironically, I had just taken my boys to a workshop held by a local children's theater company earlier in the week. He looked at me and smiled. "Interesting," he said. After a few more moments, he told me to trust my mother's instinct going forward. Then he added, before releasing my hand, "You already do. I'm just validating it."
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