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."
Wednesday, October 5, 2011
The Zen of Finger Snapping
I have a secret. I'm 36 years old and, despite the fact that both my children can, I cannot snap my fingers.
So, teaching dear old mom has become WINK and SMILE's mission for the past week. Here is how WINK described the process to me today, with my thoughts in parenthesis, while I was driving my boys home from physical therapy:
"Mommy?" (What now? I really don't need a dissertation.) "You have to focus (huh, good word...) your finger energy and channel (Did I just hear that?) it to other parts of your hand. To snap, you have to release some of the finger energy." (?!!)
When we got home, I asked DAD to repeat what he had said to WINK when he taught him to snap his fingers. Turns out, DAD mainly showed WINK how to do it. All DAD told WINK was...well, it amounted to gorilla grunts by comparison, so... it doesn't really matter.
But, just so I don't downplay my hubby's brilliance, he may have figured out something pretty spectacular. Our poor little SMILE is, depending on the activity, up to as many as 160 tics in 30 minutes. But...finger snapping seems to relieve some of his tics because it redirects his energy and focus.
So, teaching dear old mom has become WINK and SMILE's mission for the past week. Here is how WINK described the process to me today, with my thoughts in parenthesis, while I was driving my boys home from physical therapy:
"Mommy?" (What now? I really don't need a dissertation.) "You have to focus (huh, good word...) your finger energy and channel (Did I just hear that?) it to other parts of your hand. To snap, you have to release some of the finger energy." (?!!)
When we got home, I asked DAD to repeat what he had said to WINK when he taught him to snap his fingers. Turns out, DAD mainly showed WINK how to do it. All DAD told WINK was...well, it amounted to gorilla grunts by comparison, so... it doesn't really matter.
But, just so I don't downplay my hubby's brilliance, he may have figured out something pretty spectacular. Our poor little SMILE is, depending on the activity, up to as many as 160 tics in 30 minutes. But...finger snapping seems to relieve some of his tics because it redirects his energy and focus.
Tuesday, October 4, 2011
Walking the tightrope
In past posts, I've compared the day-to-day living with my spectrum boys as a roller coaster, and the frustration of being optimistic in an often gloomy situation as a flume ride. But here's another. Now that my boys are progressing and learning new social and coping skills, living with them is like walking a tightrope between hope and reality. Unfortunately, my balance has never been very good, so I regularly fall to one side or the other.
Hope is a wonderful thing. I firmly believe that my boys have done so well because DAD and I have held on to the idea that all things are possible for them. Sure, it takes a tribe of professionals and a few tired chiefs (us), but it would be impossible without hope. The problem, though, is that all the mountains my boys have climbed have done nothing to level the terrain in front of them. They still falter. And, as tempting as it is to make believe that a good day is the beginning of a new dawn, a good day is just one good day.
So, in some ways, their progress makes the road more bumpy. Would I have it any other way? Of course not. But, more often than a year ago, Dad and I find ourselves looking at one another during WINK's or SMILE's tantrums with dumbfounded expressions. "But..." we regularly say, "where did this come from? SMILE was fine sleeping in his bed last night!" or "WINK made a decision without much prompting at all yesterday!" or "I thought he was over that!"
And then comes the moment of harsh reality. My boys are still autistic when the sun rises. They are living with their variations of the same disorder on a day to day basis. Sometimes, Dad and I make it easier. Sometimes, frustration and inflated expectations get in the way and...we don't.
But tomorrow is another day and maybe it will be a good one. I hope.
Hope is a wonderful thing. I firmly believe that my boys have done so well because DAD and I have held on to the idea that all things are possible for them. Sure, it takes a tribe of professionals and a few tired chiefs (us), but it would be impossible without hope. The problem, though, is that all the mountains my boys have climbed have done nothing to level the terrain in front of them. They still falter. And, as tempting as it is to make believe that a good day is the beginning of a new dawn, a good day is just one good day.
So, in some ways, their progress makes the road more bumpy. Would I have it any other way? Of course not. But, more often than a year ago, Dad and I find ourselves looking at one another during WINK's or SMILE's tantrums with dumbfounded expressions. "But..." we regularly say, "where did this come from? SMILE was fine sleeping in his bed last night!" or "WINK made a decision without much prompting at all yesterday!" or "I thought he was over that!"
And then comes the moment of harsh reality. My boys are still autistic when the sun rises. They are living with their variations of the same disorder on a day to day basis. Sometimes, Dad and I make it easier. Sometimes, frustration and inflated expectations get in the way and...we don't.
But tomorrow is another day and maybe it will be a good one. I hope.
Monday, September 26, 2011
The leader of the pack
I realize that in almost a year of blogging, I have barely mentioned the other half of this parenting team. My husband, Greg, and I were college sweethearts. While friends of mine were falling for the cool guys who never called them back, I fell for the quiet guy with the amazing black curly hair. What set Greg apart was his kindness and open heart. His goofiness wasn't for everyone, but I thought it was endearing and felt good about myself for realizing what a fabulous little nerd he was.
Well, after over 10 years of marriage, he's still no closer to being the suave guy or the man's man. But...he's a real man. He's loving, affectionate, and above all, he's accepting of his sons' obstacles. It's surprising how many dads aren't. These other men love their children, I'm sure, but many spectrum dads take longer to come out of the denial stage. Greg jumped in the boat fairly quickly, however. At play dates and parties, Greg is running around with the boys trying to orchestrate games that the other kids will want to play. He is often at the bottom of a kiddie pile-on or trudging across the lawn with any number of children trying to tackle him. But he takes it in stride because it just might help his sons feel like one of the gang.
His type B- personality is the perfect foil to my type A+. He is strong for me when I'm tired and supportive of my every move. His goofiness often brings laughter to our table and lightens our heavy load. But...my Greg is eccentric, too.
He's always been an emotional chameleon, losing weight when I'm on a diet, getting morning sickness when I was pregnant. The other night, I was talking to him about all of the tics I had observed SMILE do that day. And then...he ticed. Right in front of me, he did a little head jerk identical to SMILE's most prominent tic. I was hysterical. Now, apparently, he has Tourette's. I told him he needs to stop, that the tic disorder card has been taken off the table, and SMILE's the only one who gets to do it.
But I love him so much and the boys want to grow up to be just like him. Which would be fine with me.
Well, after over 10 years of marriage, he's still no closer to being the suave guy or the man's man. But...he's a real man. He's loving, affectionate, and above all, he's accepting of his sons' obstacles. It's surprising how many dads aren't. These other men love their children, I'm sure, but many spectrum dads take longer to come out of the denial stage. Greg jumped in the boat fairly quickly, however. At play dates and parties, Greg is running around with the boys trying to orchestrate games that the other kids will want to play. He is often at the bottom of a kiddie pile-on or trudging across the lawn with any number of children trying to tackle him. But he takes it in stride because it just might help his sons feel like one of the gang.
His type B- personality is the perfect foil to my type A+. He is strong for me when I'm tired and supportive of my every move. His goofiness often brings laughter to our table and lightens our heavy load. But...my Greg is eccentric, too.
He's always been an emotional chameleon, losing weight when I'm on a diet, getting morning sickness when I was pregnant. The other night, I was talking to him about all of the tics I had observed SMILE do that day. And then...he ticed. Right in front of me, he did a little head jerk identical to SMILE's most prominent tic. I was hysterical. Now, apparently, he has Tourette's. I told him he needs to stop, that the tic disorder card has been taken off the table, and SMILE's the only one who gets to do it.
But I love him so much and the boys want to grow up to be just like him. Which would be fine with me.
Monday, September 19, 2011
Shaking things up
I'm pretty sure SMILE has a tic disorder. It's much too early to say it's Tourette Syndrome, it takes 6-12 months of observation to get that diagnosis, but I know what I see. SMILE's quirky movements from the summer, a lot of hand waving in front of his face, have morphed into head jerks, neck twists, shoulder shrugs, and grimaces. He also makes little grunting sounds, although he's done that for years. At first, I thought he was stimming, and the hand waving could still have been a stim, but the rest is too pervasive and unpleasant in my opinion to be based on anxiety or a need to stimulate or calm himself.
Look at it this way. Most people stim from time to time. Right now, I'm sitting here with my legs crossed and I'm waving my top leg without thinking about it. It's soothing. Ever since I first held a microphone at my grandparents' 50th wedding anniversary, I've discreetly cleared my throat before speaking publicly. It's just what I do. Other people twist their hair, smell their hands (or whatever is soapy), hum a mantra, or do any number of things to calm- or energize- themselves. But they are pleasant, at least to the person doing them, and within the person's control. There's no way possible that SMILE enjoys some of what I see happening. The neck twists and grimaces alone interrupt him while he answers questions or tells a story sometimes. The shoulder shrugs have hit during games at home, and we've had to pause until they've passed. Much of the time, SMILE is neither stressed nor lacking in stimulation when his body "gets flappy" (as he puts it). To me, this all means he's having tics. Add to this the facts that SMILE is just about the right age for symptoms to start (it's 7), it's a common co-morbid issue for spectrum kids, and it's linked to OCD, and I'm pretty certain a diagnosis is in our futures.
I've done some preliminary research on line and I've spoken to his developmental pediatrician. So far, it seems like my only three options for SMILE are: 1) Pray he outgrows this as he gets older (some children do); 2) Medicate him; 3) Do both. I'm not crazy about any of them. I'm all for praying, but not as a form of treatment. I hate seeing SMILE's little body and face contort. I'm afraid that he'll be a bigger target for bullying. But, medicate him? I'm not ready. I don't think there's such a thing as a medication that is side-effect free, or one that will work on any body chemistry. Most parents I've spoken to talk about a trial and error period that was horrible to go through because it caused all sorts of problems (depression, rages, weight gain, more tics, anxiety, etc) until they found the right drug or dosage. My little SMILE has gone through so much already. He's fought so hard in the past year to learn better behavior and to regulate himself, that I can't stand the idea of putting something in his system that can throw him so out of whack.
Is medication necessary in some cases? No doubt, in my opinion. A child who can't function or sleep because of his high anxiety, a child who is miserable because of his condition, a child whose present symptoms are more severe or dangerous than the side effects of medication, should probably have medication. But the purpose is to calm or eliminate symptoms of a disease. But what if there is no dis-ease ("dis" means "without")? What if SMILE isn't bothered by his tics? They don't hurt him. They're not dangerous to him or anyone else. He doesn't seem anxious, reserved, or depressed about them. They're not interfering with school. As a matter of fact, I think he's delighted by his tics and the possibility that, some day, they might get him out of trouble (he's tried with me-but no such luck).
So, unless his tics become a problem for him- physically or emotionally- or others are put at risk by his tics, I think I'll take my little SMILE the way he is. No matter how shaken or stirred it makes me.
Look at it this way. Most people stim from time to time. Right now, I'm sitting here with my legs crossed and I'm waving my top leg without thinking about it. It's soothing. Ever since I first held a microphone at my grandparents' 50th wedding anniversary, I've discreetly cleared my throat before speaking publicly. It's just what I do. Other people twist their hair, smell their hands (or whatever is soapy), hum a mantra, or do any number of things to calm- or energize- themselves. But they are pleasant, at least to the person doing them, and within the person's control. There's no way possible that SMILE enjoys some of what I see happening. The neck twists and grimaces alone interrupt him while he answers questions or tells a story sometimes. The shoulder shrugs have hit during games at home, and we've had to pause until they've passed. Much of the time, SMILE is neither stressed nor lacking in stimulation when his body "gets flappy" (as he puts it). To me, this all means he's having tics. Add to this the facts that SMILE is just about the right age for symptoms to start (it's 7), it's a common co-morbid issue for spectrum kids, and it's linked to OCD, and I'm pretty certain a diagnosis is in our futures.
I've done some preliminary research on line and I've spoken to his developmental pediatrician. So far, it seems like my only three options for SMILE are: 1) Pray he outgrows this as he gets older (some children do); 2) Medicate him; 3) Do both. I'm not crazy about any of them. I'm all for praying, but not as a form of treatment. I hate seeing SMILE's little body and face contort. I'm afraid that he'll be a bigger target for bullying. But, medicate him? I'm not ready. I don't think there's such a thing as a medication that is side-effect free, or one that will work on any body chemistry. Most parents I've spoken to talk about a trial and error period that was horrible to go through because it caused all sorts of problems (depression, rages, weight gain, more tics, anxiety, etc) until they found the right drug or dosage. My little SMILE has gone through so much already. He's fought so hard in the past year to learn better behavior and to regulate himself, that I can't stand the idea of putting something in his system that can throw him so out of whack.
Is medication necessary in some cases? No doubt, in my opinion. A child who can't function or sleep because of his high anxiety, a child who is miserable because of his condition, a child whose present symptoms are more severe or dangerous than the side effects of medication, should probably have medication. But the purpose is to calm or eliminate symptoms of a disease. But what if there is no dis-ease ("dis" means "without")? What if SMILE isn't bothered by his tics? They don't hurt him. They're not dangerous to him or anyone else. He doesn't seem anxious, reserved, or depressed about them. They're not interfering with school. As a matter of fact, I think he's delighted by his tics and the possibility that, some day, they might get him out of trouble (he's tried with me-but no such luck).
So, unless his tics become a problem for him- physically or emotionally- or others are put at risk by his tics, I think I'll take my little SMILE the way he is. No matter how shaken or stirred it makes me.
Sunday, September 11, 2011
That's my boy...
WINK picked a dandelion this morning and presented it to me as a gift. Then he asked why I had tried to stop him from picking it. I didn't want to say it was because we were in a hurry to get to church, so I said I like flowers to grow where they belong (although I loved my gift). His response? "Well, I wanted to pick it for two reasons: First, because I love you. Second, because it's a weed and plants can't grow where weeds are. So, actually, I did a good thing for the world."
Tuesday, September 6, 2011
From WINK's Point of View
WINK's TSS introduced a new activity today. She held up a card for him to look at and asked him to describe the child in the picture.
"Pretend this is your friend and you want to describe her to me so I can find her in a group of kids. How would you describe her?"
WINK studied the picture and said, "She's the one with the big smile."
"Okay," the TSS said. "What else would you say?"
"Ummm...she has beautiful eyes and she's nice."
I couldn't see the card she was holding up, but I could tell that the TSS was struggling to get to a point that evaded WINK.
"What is something you see that you wouldn't say about the girl in the picture?" Long pause. "It's okay, WINK, you can see that she looks different. You can say it."
"Sometimes...she's not happy and doesn't smile."
What is this girl showing my son? I walked across the room to stand behind WINK's shoulder so I could see the picture in WINK's hand.
My mouth hung open as I sighed and rested my hand on my little man's shoulder. The picture was of a little girl with a big smile and beautiful eyes. The fact that she had Down's Syndrome was unremarkable and unimportant to my son. In WINK's eyes, the little girl was just pretty and nice.
The TSS moved on to another card. This time, WINK noted that the child had brown hair like his and wore a purple dress with snowflakes on it. Again, the TSS pressed him to say what he sees but knows he shouldn't say. I looked at the card. The girl in the picture was overweight.
The TSS commented on how great it was that WINK knew not to say anything about the children's differences. After my WINK moved away, I corrected Ms. TSS: My WINK didn't think they were important.
"Pretend this is your friend and you want to describe her to me so I can find her in a group of kids. How would you describe her?"
WINK studied the picture and said, "She's the one with the big smile."
"Okay," the TSS said. "What else would you say?"
"Ummm...she has beautiful eyes and she's nice."
I couldn't see the card she was holding up, but I could tell that the TSS was struggling to get to a point that evaded WINK.
"What is something you see that you wouldn't say about the girl in the picture?" Long pause. "It's okay, WINK, you can see that she looks different. You can say it."
"Sometimes...she's not happy and doesn't smile."
What is this girl showing my son? I walked across the room to stand behind WINK's shoulder so I could see the picture in WINK's hand.
My mouth hung open as I sighed and rested my hand on my little man's shoulder. The picture was of a little girl with a big smile and beautiful eyes. The fact that she had Down's Syndrome was unremarkable and unimportant to my son. In WINK's eyes, the little girl was just pretty and nice.
The TSS moved on to another card. This time, WINK noted that the child had brown hair like his and wore a purple dress with snowflakes on it. Again, the TSS pressed him to say what he sees but knows he shouldn't say. I looked at the card. The girl in the picture was overweight.
The TSS commented on how great it was that WINK knew not to say anything about the children's differences. After my WINK moved away, I corrected Ms. TSS: My WINK didn't think they were important.
Sunday, September 4, 2011
My 'I Love' List
I tell my boys that I am proud of them every day. While their peers are doing kid stuff after school- music, dance, karate- my boys are facing one form of therapy or another. My WINK has six therapy hours a week. SMILE has seven (down from last year's eleven hour prescription). They try so hard in everything they do, they don't give up, and they keep smiling through most of it week after week.
But even though I am proud every day, some days are just really spectacular...
After days of anticipation, WINK donned his shin guards today to take the field for his first ever soccer game. He stood in the middle of the field, the smallest and skinniest boy out there, and mostly looked at the coach as he addressed the team. He learned to dribble the ball (short kicks from one foot to the other), maneuver through obstacle courses, and "shoot" to make a goal.
When it was game time, WINK was neither the fastest nor the most coordinated. But he sure had a lot of heart. He followed that ball from one end of the field to the other and back again. When the ball rebounded off someone else and landed near him, he connected with the ball. Sure, he was running several feet behind the other players, but he never gave up. The first time he played defense, he defended his spot of grass a bit too vehemently (he wouldn't budge from his space). The second time, after I told him he needs to go after the ball even if it doesn't come right to him, he covered the whole field valiantly. But the third time, he did it just right. He came off the field glowing with pride and launched himself into DAD's arms. I hugged him tight and told him he had done a great job. I asked him if he had fun and he said, beaming, that soccer is awesome.
At the end of the game, SMILE told WINK that he could play the Wii for an extra, extra, extra long time when we got home. When DAD asked him why he was giving WINK this high honor, SMILE said, "Because I love watching him play the Wii and I love seeing him play soccer." Two hours later, after a celebratory dinner at Wendy's and a trip to a local ice cream parlor, we were finally home. Once again, SMILE made his generous offer. When DAD asked why he wanted WINK to play, SMILE said, "Because WINK is on my 'I love' list. I keep it in my heart."
Wow! I'm starting to see the magnitude of SMILE's personality. His autism and probable tic disorder is more and more visible every day, even to me. It's there in how he walks, tilts his head, and screws up his face. It's there in how he still confuses his pronouns, sometimes answers the wrong "w" question, and stops and starts his sentences because his mouth and brain are moving at different speeds. But...he's poetic!
When Dad and I turned to WINK and asked if he'd had a good day, our little sage thought a minute and replied, "More than you think..."
Hmm. How do they do that? How do both of my boys manage to say so much in so few words? I came upon a phrase the other day that I immediately thought summed up WINK's talent: "Spiritual giftedness." But...I think that's my little SMILE, too. The prediction I made a few weeks ago, that their level of comfort in the water is only the first indication that they will surpass me, seems to be coming true very quickly. So, instead of clumsily stringing together sentiment, I'll leave it to the experts. "WINK and SMILE, you are on my 'I love' list that I keep in my heart...more than you think.'"
But even though I am proud every day, some days are just really spectacular...
After days of anticipation, WINK donned his shin guards today to take the field for his first ever soccer game. He stood in the middle of the field, the smallest and skinniest boy out there, and mostly looked at the coach as he addressed the team. He learned to dribble the ball (short kicks from one foot to the other), maneuver through obstacle courses, and "shoot" to make a goal.
When it was game time, WINK was neither the fastest nor the most coordinated. But he sure had a lot of heart. He followed that ball from one end of the field to the other and back again. When the ball rebounded off someone else and landed near him, he connected with the ball. Sure, he was running several feet behind the other players, but he never gave up. The first time he played defense, he defended his spot of grass a bit too vehemently (he wouldn't budge from his space). The second time, after I told him he needs to go after the ball even if it doesn't come right to him, he covered the whole field valiantly. But the third time, he did it just right. He came off the field glowing with pride and launched himself into DAD's arms. I hugged him tight and told him he had done a great job. I asked him if he had fun and he said, beaming, that soccer is awesome.
At the end of the game, SMILE told WINK that he could play the Wii for an extra, extra, extra long time when we got home. When DAD asked him why he was giving WINK this high honor, SMILE said, "Because I love watching him play the Wii and I love seeing him play soccer." Two hours later, after a celebratory dinner at Wendy's and a trip to a local ice cream parlor, we were finally home. Once again, SMILE made his generous offer. When DAD asked why he wanted WINK to play, SMILE said, "Because WINK is on my 'I love' list. I keep it in my heart."
Wow! I'm starting to see the magnitude of SMILE's personality. His autism and probable tic disorder is more and more visible every day, even to me. It's there in how he walks, tilts his head, and screws up his face. It's there in how he still confuses his pronouns, sometimes answers the wrong "w" question, and stops and starts his sentences because his mouth and brain are moving at different speeds. But...he's poetic!
When Dad and I turned to WINK and asked if he'd had a good day, our little sage thought a minute and replied, "More than you think..."
Hmm. How do they do that? How do both of my boys manage to say so much in so few words? I came upon a phrase the other day that I immediately thought summed up WINK's talent: "Spiritual giftedness." But...I think that's my little SMILE, too. The prediction I made a few weeks ago, that their level of comfort in the water is only the first indication that they will surpass me, seems to be coming true very quickly. So, instead of clumsily stringing together sentiment, I'll leave it to the experts. "WINK and SMILE, you are on my 'I love' list that I keep in my heart...more than you think.'"
Saturday, September 3, 2011
Stepping back...maybe
DAD and I spent days prepping WINK and building up his "social story" rolodex. What to say if:
- he needs to go to the bathroom
- he isn't called on by his teacher and someone takes "his" answer
- someone gives a wrong answer to a teacher's question
- he isn't getting a turn/ wants a turn
- wants to play with someone
- wants to join in a game
But our concern has been focused on the 20 minutes a day WINK spends on the recess yard. We prepped him to go over to one boy in particular, someone he knows from last year, and ask him. After the first day, WINK said he tried to get his attention, but he didn't answer. Hmm. We suggested that he could ask this boy if he wants to play tag before their class goes to lunch so there would be fewer distractions. After assuring WINK that he could, in fact, talk sometimes in class, he agreed that he could try that. But not on the second day, apparently. He was too nervous. I pointed out that he would get left out of stuff if he didn't ask to join in. But, the third day was the charm. WINK walked over to his friend before lunch and asked him if he wanted to play tag with him. And...his friend said "no."
Damn it! I thought. Why couldn't this kid see WINK's sweetness instead of his awkwardness and just say 'yes'? Why didn't he understand what a huge step it was for WINK to ask to play? Of course, I know it's because he's a kid. Of course. But still... I gathered my nerves and calmly pointed out that this little boy may not have wanted to play tag. I asked WINK how he felt. He said, "still happy," and I pray that was the truth.
But lesson learned. I have to butt out sometimes. I have to let my WINK go at his own pace. On the fourth day of school, I dropped WINK off at the point where his class lines up every morning. I whispered that I'm proud of him, and walked away to talk to his teacher. I alternated between badly wanting to trip the kid that had upset my son and wanting to set up an elaborate play date to space camp to win his loyalty. Of course, I didn't do either.
Good thing, too. On the fourth day, they played basketball at recess.
- he needs to go to the bathroom
- he isn't called on by his teacher and someone takes "his" answer
- someone gives a wrong answer to a teacher's question
- he isn't getting a turn/ wants a turn
- wants to play with someone
- wants to join in a game
But our concern has been focused on the 20 minutes a day WINK spends on the recess yard. We prepped him to go over to one boy in particular, someone he knows from last year, and ask him. After the first day, WINK said he tried to get his attention, but he didn't answer. Hmm. We suggested that he could ask this boy if he wants to play tag before their class goes to lunch so there would be fewer distractions. After assuring WINK that he could, in fact, talk sometimes in class, he agreed that he could try that. But not on the second day, apparently. He was too nervous. I pointed out that he would get left out of stuff if he didn't ask to join in. But, the third day was the charm. WINK walked over to his friend before lunch and asked him if he wanted to play tag with him. And...his friend said "no."
Damn it! I thought. Why couldn't this kid see WINK's sweetness instead of his awkwardness and just say 'yes'? Why didn't he understand what a huge step it was for WINK to ask to play? Of course, I know it's because he's a kid. Of course. But still... I gathered my nerves and calmly pointed out that this little boy may not have wanted to play tag. I asked WINK how he felt. He said, "still happy," and I pray that was the truth.
But lesson learned. I have to butt out sometimes. I have to let my WINK go at his own pace. On the fourth day of school, I dropped WINK off at the point where his class lines up every morning. I whispered that I'm proud of him, and walked away to talk to his teacher. I alternated between badly wanting to trip the kid that had upset my son and wanting to set up an elaborate play date to space camp to win his loyalty. Of course, I didn't do either.
Good thing, too. On the fourth day, they played basketball at recess.
Wednesday, August 31, 2011
A new school year
My little loves started a new school year. Both my boys are going to have big years. For SMILE, this is his first year of full-day school. For WINK, this is the year that school really becomes SCHOOL and his comfort zone is going to get stretched as he tries to keep up with his classmates. But they marched, undaunted, over to where their classes were lined up, book bags and lunchboxes in hand, hair spiked, and wrinkle free. DAD stayed home to see them off, of course, but also so he could stop me from sneaking into the school and camping out in front of SMILE's classroom door.
The drop off area was cluttered with smiling parents, many bending down for one more kiss. Cameras and camcorders were snapping and rolling everywhere I turned. To anyone looking on, my behavior was no different than the next gushing parent's. Except I was praying that none of SMILE's classmates would care that he can't stop stimming or performing tics. I watched the other 6 year olds and I wanted to promise them candy, toys, ponies, cars, ANYTHING...if they'd just be nice to my boy and keep it up for the next nine months. But I can't.
I wanted to wire WINK so I could hear how his "friends" treat him in class. I want to be able to whisper prompts in his ear and tell him what to say in every situation. But I can't.
DAD thinks I need to calm down. But I can't.
The drop off area was cluttered with smiling parents, many bending down for one more kiss. Cameras and camcorders were snapping and rolling everywhere I turned. To anyone looking on, my behavior was no different than the next gushing parent's. Except I was praying that none of SMILE's classmates would care that he can't stop stimming or performing tics. I watched the other 6 year olds and I wanted to promise them candy, toys, ponies, cars, ANYTHING...if they'd just be nice to my boy and keep it up for the next nine months. But I can't.
I wanted to wire WINK so I could hear how his "friends" treat him in class. I want to be able to whisper prompts in his ear and tell him what to say in every situation. But I can't.
DAD thinks I need to calm down. But I can't.
Friday, August 26, 2011
My little cave dwellers
SMILE's tantrums have dictated our family's outings for years. Even before his diagnosis, DAD and I have been planning trips around SMILE's unpredictable moods. But in light of his recent startling achievements, we decided to scratch something off of the "Can Never Do" list: We went to a crystal cave.
WINK was overjoyed. He's my little science guy. But SMILE vetoed the idea as soon as he heard the word "cave." Thankfully, our little guy was able to vocalize the problem with just a little prompting: bats.
"No, no, no. There are no bats," Dad said.
"And no bears," I added.
Oh. In that case...
The cave was dark in areas (we forgot a flashlight), narrow in spots (which made our tour group walk and stand real close at times), and cold. But it was also colorful and mysterious, with sensory input everywhere. SMILE peered up into "cave chimneys," stared into crevices to see stalagmites and stalactites (yes, he now knows the difference), and giggled at the hidden pictures in the rocks (the tour guide pointed out several formations that really did resemble animals). There was a moment when I felt a twinge of panic, though. The tour guide turned out all lights in our section so we could see certain rocks glow in black light. SMILE ducked his head, rocked back and forth, and started babbling to himself. I realized that, if he were to tantrum, I had no way of removing him from the group. But I calmly, squeezed his shoulders and said, "I'm right here with you, SMILE. Mommy's right here" (I've found that doing away with pronouns helps him process when he's stressed). A few minutes later, the lights came on and my beautiful boy lifted his head, unshaken and unharmed.
WINK ooh-ed and ah-ed more than anyone else on the tour. After the tour and a moderately expensive trip to the gift shop, we allowed the boys to pan for gems. WINK triumphantly held up what he called a diamond. It was a large shard of quartz. When I told him it was a crystal, he lit up brighter than the gem, and literally shook with amazement.
When the boys were each finished, I sent DAD back to the gift shop to buy another bag of dirt. SMILE flipped out. Ooop. He expected to go after panning for gems and going back to do more was not in his plan. So, I sat with my screaming son, happy for the high points, while my WINK panned his way through another bag.
{Shrug} What can you do? People are like those stones, I guess. We all need a bit more polishing to wash away the dirt sometimes.
WINK was overjoyed. He's my little science guy. But SMILE vetoed the idea as soon as he heard the word "cave." Thankfully, our little guy was able to vocalize the problem with just a little prompting: bats.
"No, no, no. There are no bats," Dad said.
"And no bears," I added.
Oh. In that case...
The cave was dark in areas (we forgot a flashlight), narrow in spots (which made our tour group walk and stand real close at times), and cold. But it was also colorful and mysterious, with sensory input everywhere. SMILE peered up into "cave chimneys," stared into crevices to see stalagmites and stalactites (yes, he now knows the difference), and giggled at the hidden pictures in the rocks (the tour guide pointed out several formations that really did resemble animals). There was a moment when I felt a twinge of panic, though. The tour guide turned out all lights in our section so we could see certain rocks glow in black light. SMILE ducked his head, rocked back and forth, and started babbling to himself. I realized that, if he were to tantrum, I had no way of removing him from the group. But I calmly, squeezed his shoulders and said, "I'm right here with you, SMILE. Mommy's right here" (I've found that doing away with pronouns helps him process when he's stressed). A few minutes later, the lights came on and my beautiful boy lifted his head, unshaken and unharmed.
WINK ooh-ed and ah-ed more than anyone else on the tour. After the tour and a moderately expensive trip to the gift shop, we allowed the boys to pan for gems. WINK triumphantly held up what he called a diamond. It was a large shard of quartz. When I told him it was a crystal, he lit up brighter than the gem, and literally shook with amazement.
When the boys were each finished, I sent DAD back to the gift shop to buy another bag of dirt. SMILE flipped out. Ooop. He expected to go after panning for gems and going back to do more was not in his plan. So, I sat with my screaming son, happy for the high points, while my WINK panned his way through another bag.
{Shrug} What can you do? People are like those stones, I guess. We all need a bit more polishing to wash away the dirt sometimes.
Thursday, August 18, 2011
Sons over the horizon
I'm writing this from my bedroom. The boys are downstairs. Yep, you read it right. They are out of my line of sight and I don't hear any screaming, yelling, tattling, crashing, or any other sign of chaos. And I'm here writing, not scrambling, refereeing, dodging punches, punishing, or showing any sign of stress. I'm sitting like a pretzel on my cushy bed, blogging, and watching "Sex In The City" reruns.
Sure, SMILE had a 25 minute tantrum last week because I missed a phone call (didn't see that coming). Yeah, he's developing two tics that lead me to believe that Tourettes may be a possibility (not uncommon for kids on the spectrum). But... we had a park play date that morphed into a five hour tour of our city (park, eat in fast food, friend's house) yesterday, and SMILE handled the changes in plan BEAUTIFULLY! And today...we took the plunge and had a play date with four friends at our house. Dangerous proposition, that, because it means sharing toys, sharing the Wii, coping with lots of noise, and all on his turf where he usually expects routine. SMILE came through like a little champion!
And my WINK? He interacted and stayed engaged with his friends. True, he has more success when the other child is more demonstrative. Yes, today's play date (a raging success) was centered around video games, but my WINK shined today. It was all I could do not to scoop him up and kiss his face off when he, several hours in to the play date, piped up and asked if he could take his friend (the oldest of the four) downstairs to play. EEEEEKKK! Sure, it was just two weeks ago that WINK hissed at a child he didn't like (I couldn't make this up if I tried), but today...WINK was awesome.
My little WINK and SMILE...
They are finally peeking through their issues and showing their real personalities. Back when this evaluation process started, I said there was something "off" about SMILE. I told my husband that I see my beautiful sweet boy when I look at him, but that it was like SMILE was living behind a veil. That veil will always be there, but he's getting in front of it. Earlier in the week, WINK and I were talking about courageous people who decide to make a difference in the lives of others through acts of kindness. I asked him if he would want to do something like that. He said, "Maybe. But only if I could help SMILE, too, and kids like him."
Hmm...it's funny. I've loved my boys from the start of their lives. My respect for their struggles make me feel even more love for my little warriors. But...well..the other day, I watched WINK swim for the first time and SMILE was bobbing next to him, and I thought with the same certainty that has served me well in the past, "This is only the first time that my boys will surpass me."
I don't know what I ever did to deserve my little boys, but I'm going to keep on doing it.
Sure, SMILE had a 25 minute tantrum last week because I missed a phone call (didn't see that coming). Yeah, he's developing two tics that lead me to believe that Tourettes may be a possibility (not uncommon for kids on the spectrum). But... we had a park play date that morphed into a five hour tour of our city (park, eat in fast food, friend's house) yesterday, and SMILE handled the changes in plan BEAUTIFULLY! And today...we took the plunge and had a play date with four friends at our house. Dangerous proposition, that, because it means sharing toys, sharing the Wii, coping with lots of noise, and all on his turf where he usually expects routine. SMILE came through like a little champion!
And my WINK? He interacted and stayed engaged with his friends. True, he has more success when the other child is more demonstrative. Yes, today's play date (a raging success) was centered around video games, but my WINK shined today. It was all I could do not to scoop him up and kiss his face off when he, several hours in to the play date, piped up and asked if he could take his friend (the oldest of the four) downstairs to play. EEEEEKKK! Sure, it was just two weeks ago that WINK hissed at a child he didn't like (I couldn't make this up if I tried), but today...WINK was awesome.
My little WINK and SMILE...
They are finally peeking through their issues and showing their real personalities. Back when this evaluation process started, I said there was something "off" about SMILE. I told my husband that I see my beautiful sweet boy when I look at him, but that it was like SMILE was living behind a veil. That veil will always be there, but he's getting in front of it. Earlier in the week, WINK and I were talking about courageous people who decide to make a difference in the lives of others through acts of kindness. I asked him if he would want to do something like that. He said, "Maybe. But only if I could help SMILE, too, and kids like him."
Hmm...it's funny. I've loved my boys from the start of their lives. My respect for their struggles make me feel even more love for my little warriors. But...well..the other day, I watched WINK swim for the first time and SMILE was bobbing next to him, and I thought with the same certainty that has served me well in the past, "This is only the first time that my boys will surpass me."
I don't know what I ever did to deserve my little boys, but I'm going to keep on doing it.
Tuesday, July 5, 2011
Sponge Bob and Mr. Rob
Drum roll, please. Today (today... today...) for the first time ever (ever... ever...), WINK and SMILE got on a school bus without me. I know, I know. It's summer and they were going to camp, not school, but I don't know what else to call it. But they marched on like little pros, like they've been doing it all their short lives, without one glance behind them.
My boys are off to day camp. It's a camp for spectrum kids, so the main focus is on building social skills, but it's run like an ordinary camp, complete with swim time, games, etc. I'm a nervous wreck, of course, but they don't know that. And there are two things that are keeping all of my anxiety at bay: Sponge Bob and Mr. Rob.
SMILE tantrumed for over a week about going to camp. Any time I tried to talk to him about it, he refused to engage in the conversation. It just wasn't going to happen in his mind. I placed a phone call to the director of the program and found out that, through some divine intervention, SMILE was going to be placed in the Sponge Bob theme room at camp. "Does he happen to like Sponge Bob?" the director asked. "He would trade me for Sponge Bob," was my reply. At my request, we took a tour last week and, just as I had hoped, all of SMILE's anxieties were forgotten as soon as he saw the cast of familiar characters taped to the walls and the many jellyfish hanging from the ceiling. Whew!
WINK, however, has been excited for the past two weeks about going to camp. I mean arm flapping, jumping up and down, can't stop smiling excited. Why? Because his group leader is Mr. Rob.
Let me backtrack for a moment: Several months ago, I called the director of this camp program, which is affiliated with the agency that provides WINK and SMILE's behavioral services, and asked if Rob was going to lead the Aspergers group at camp. She said he probably would because he always had in the past. I pleaded with her to give me some assurance that WINK would be in his group. I explained that Rob already knew WINK because he has been WINK's social skills teacher for the past year at a different agency (Rob works in two agencies). I waxed poetic about the progress WINK has made and how Rob is a truly gifted therapist who is doing what he so clearly is meant to do in life. And I meant it. I {heart} Mr. Rob. I told WINK and SMILE's TSS about the conversation later that day and she went into laughing convulsions at my dining room table. "You do know," she gasped between guffaws, "that the camp director is Rob's wife, right?"
Ummm...no. I did not know that. But I don't care. I am sure that she is used to her husband's spectrum mom groupies. He's fabulous at what he does and I'm thrilled that WINK has a spot in Mr. Rob's group. I truly have no worries and that's a very rare thing.
So, it's 2:00 and my boys are one hour away from finishing their first day of summer camp. I can't wait until they get home. I've missed them something awful but I can't wait to hear every detail.
My boys are off to day camp. It's a camp for spectrum kids, so the main focus is on building social skills, but it's run like an ordinary camp, complete with swim time, games, etc. I'm a nervous wreck, of course, but they don't know that. And there are two things that are keeping all of my anxiety at bay: Sponge Bob and Mr. Rob.
SMILE tantrumed for over a week about going to camp. Any time I tried to talk to him about it, he refused to engage in the conversation. It just wasn't going to happen in his mind. I placed a phone call to the director of the program and found out that, through some divine intervention, SMILE was going to be placed in the Sponge Bob theme room at camp. "Does he happen to like Sponge Bob?" the director asked. "He would trade me for Sponge Bob," was my reply. At my request, we took a tour last week and, just as I had hoped, all of SMILE's anxieties were forgotten as soon as he saw the cast of familiar characters taped to the walls and the many jellyfish hanging from the ceiling. Whew!
WINK, however, has been excited for the past two weeks about going to camp. I mean arm flapping, jumping up and down, can't stop smiling excited. Why? Because his group leader is Mr. Rob.
Let me backtrack for a moment: Several months ago, I called the director of this camp program, which is affiliated with the agency that provides WINK and SMILE's behavioral services, and asked if Rob was going to lead the Aspergers group at camp. She said he probably would because he always had in the past. I pleaded with her to give me some assurance that WINK would be in his group. I explained that Rob already knew WINK because he has been WINK's social skills teacher for the past year at a different agency (Rob works in two agencies). I waxed poetic about the progress WINK has made and how Rob is a truly gifted therapist who is doing what he so clearly is meant to do in life. And I meant it. I {heart} Mr. Rob. I told WINK and SMILE's TSS about the conversation later that day and she went into laughing convulsions at my dining room table. "You do know," she gasped between guffaws, "that the camp director is Rob's wife, right?"
Ummm...no. I did not know that. But I don't care. I am sure that she is used to her husband's spectrum mom groupies. He's fabulous at what he does and I'm thrilled that WINK has a spot in Mr. Rob's group. I truly have no worries and that's a very rare thing.
So, it's 2:00 and my boys are one hour away from finishing their first day of summer camp. I can't wait until they get home. I've missed them something awful but I can't wait to hear every detail.
Thursday, June 23, 2011
Summertime...
When I was a kid, summer was a magical time full of fireflies and fireworks, sandals and sunblock, that never lasted long enough. But as an adult, a teacher, the months between May and September were nothing more to me than much needed time to tweak lesson plans and prepare for new students. Later, as a stay-at-home mom of very young boys, summer days were suddenly too hot, the baby gear too cumbersome to lug around, the SPF too low, the backyard too full of bugs. I had become a summertime Scrooge.
But this summer with WINK and SMILE has been fabulous so far. WINK is just beginning to swim. SMILE is becoming more verbal and showing off his brand of brilliance. They're both losing baby teeth faster than the tooth-fairy can fly, and doing chores without being asked...at least some of the time. My little ones are growing up and, now, I am looking ahead a few months to a very ugly time indeed: September will bring with it full-day school for my "baby" SMILE. My sweet WINK will go back to calling me Mom instead of Mommy, maybe this time without being reminded, and it will break my heart even as I give him a thumbs up for remembering this important social cue.
So I'll soak up the sun rays as they bring out WINK's auburn highlights and SMILE's blond ones. I'll breath in the scent of chlorine that lingers on their skin as they fall asleep during story time. I'll chase fireflies, and I'll believe in magic. Because summertime doesn't last long enough.
But this summer with WINK and SMILE has been fabulous so far. WINK is just beginning to swim. SMILE is becoming more verbal and showing off his brand of brilliance. They're both losing baby teeth faster than the tooth-fairy can fly, and doing chores without being asked...at least some of the time. My little ones are growing up and, now, I am looking ahead a few months to a very ugly time indeed: September will bring with it full-day school for my "baby" SMILE. My sweet WINK will go back to calling me Mom instead of Mommy, maybe this time without being reminded, and it will break my heart even as I give him a thumbs up for remembering this important social cue.
So I'll soak up the sun rays as they bring out WINK's auburn highlights and SMILE's blond ones. I'll breath in the scent of chlorine that lingers on their skin as they fall asleep during story time. I'll chase fireflies, and I'll believe in magic. Because summertime doesn't last long enough.
Wednesday, June 8, 2011
The Kindness of Strangers
It's so easy to forget that amid tantrums, sensory issues, and mounting anxiety (OCD), my boys want the same things other boys want. They want to play with peers at the park (some of the time), they want play dates, they want to be good at sports. They don't have age-appropriate autonomy or coordination yet but they are working on it. WINK has finally started to call me "Mom" when other kids are around. SMILE has learned to control his more violent tantrums when he hears my "teacher voice." WINK has learned to swing on his tummy when he wants to go on the park swings rather than struggle to climb into the seat by himself or- YIKES- ask me or a friend for help. SMILE is trying really hard to be okay with taking turns. So, they're getting there and socially failing less and less.
True, for every success, there has been a few cringe worthy stumbles, but they are still young, right? Maybe. It's still tempting to keep them home all the time, to just wipe out the need to subject them to social situations, though. Even if they don't see the stares they illicit from other people, I do. Even if they can't interpret what it means when kids move away from them during circle time, I can. And I want to protect them.
That's why yesterday was so important. I wanted to plan a little get together with some of WINK's school friends. I ran through several options: Roller skating? WINK won't leave the rug to go on the rink and the noise is too much for SMILE; Movie? Not enough interaction. Park? Too many opportunities for WINK to isolate himself; Do it at the house? Ummm....SMILE's house, SMILE's rules and, besides, WINK still plays with stuffed animals. Utterly discouraged and about to forget about the idea, I thought of bowling. Bowling? It will keep their attention. It's social without being overly so. Perfect. I asked WINK to choose three friends to invite. He chose five, but WHATEVER. I sent out five emails to the boys' families and waited. One of the two main boys answered right away. SCORE! But then...my in box remained empty. As the days went by, WINK continually asked about one boy in particular, the other main boy . He urged me to call the boy's parents. I said "no" because that wouldn't get him any cool points. Then, the day before we were set to go, the impossible happened. WINK. Called. A. FRIEND.
The day of the "event," WINK and I had lunch with the one firm reply we got (a very good friend) before heading to the bowling...what?...lanes. I was excited and a bit relieved that this would be a small get together. Still, I watched the clock to see if this boy WINK had called would show up. When 1:00 came and went, I let WINK and SMILE start a game while WINK's friend and sister played in the next lane. Then...it happened. WINK's other friend showed up! He was there. I was so excited I had to stop myself from hugging his father.
I prompted WINK subtly when his friends weren't looking. I told him when to cheer, give a high five, etc. Except for SMILE's full-force tantrum when the game ended and he hadn't gotten a spare or strike, it was a great day.
But it was made even better when I went up to the shoe-rental counter to ask a question and an older woman stopped me when she saw my "Autism Awareness" bracelet.
"My son is 43 and he has autism," she said.
I pointed to my boys and told her their diagnoses.
"I wanted to stop you and tell you," she continued, "that my son is 43, drives a car, has his own apartment, and works a 40 hour a week job. So...there's a lot of hope."
I thanked her, of course, and teared up a bit. "I do worry," I started.
"Of course you do."
True, for every success, there has been a few cringe worthy stumbles, but they are still young, right? Maybe. It's still tempting to keep them home all the time, to just wipe out the need to subject them to social situations, though. Even if they don't see the stares they illicit from other people, I do. Even if they can't interpret what it means when kids move away from them during circle time, I can. And I want to protect them.
That's why yesterday was so important. I wanted to plan a little get together with some of WINK's school friends. I ran through several options: Roller skating? WINK won't leave the rug to go on the rink and the noise is too much for SMILE; Movie? Not enough interaction. Park? Too many opportunities for WINK to isolate himself; Do it at the house? Ummm....SMILE's house, SMILE's rules and, besides, WINK still plays with stuffed animals. Utterly discouraged and about to forget about the idea, I thought of bowling. Bowling? It will keep their attention. It's social without being overly so. Perfect. I asked WINK to choose three friends to invite. He chose five, but WHATEVER. I sent out five emails to the boys' families and waited. One of the two main boys answered right away. SCORE! But then...my in box remained empty. As the days went by, WINK continually asked about one boy in particular, the other main boy . He urged me to call the boy's parents. I said "no" because that wouldn't get him any cool points. Then, the day before we were set to go, the impossible happened. WINK. Called. A. FRIEND.
The day of the "event," WINK and I had lunch with the one firm reply we got (a very good friend) before heading to the bowling...what?...lanes. I was excited and a bit relieved that this would be a small get together. Still, I watched the clock to see if this boy WINK had called would show up. When 1:00 came and went, I let WINK and SMILE start a game while WINK's friend and sister played in the next lane. Then...it happened. WINK's other friend showed up! He was there. I was so excited I had to stop myself from hugging his father.
I prompted WINK subtly when his friends weren't looking. I told him when to cheer, give a high five, etc. Except for SMILE's full-force tantrum when the game ended and he hadn't gotten a spare or strike, it was a great day.
But it was made even better when I went up to the shoe-rental counter to ask a question and an older woman stopped me when she saw my "Autism Awareness" bracelet.
"My son is 43 and he has autism," she said.
I pointed to my boys and told her their diagnoses.
"I wanted to stop you and tell you," she continued, "that my son is 43, drives a car, has his own apartment, and works a 40 hour a week job. So...there's a lot of hope."
I thanked her, of course, and teared up a bit. "I do worry," I started.
"Of course you do."
Thursday, June 2, 2011
Sometimes you win some...
I have often struggled with finding my place alongside the professionals in my boys' lives. It's not so bad when I take them to physical therapy or speech. Sure, I feel a bit squirmy inside when I really think about the progress these therapists have made with my children. It hurts my pride that I wasn't the one to help them. But I can sit in the waiting room while they work their magic and it's no different than bringing them to a doctor's office. Or so I tell myself.
But working with even the most sensitive and compassionate behavioral specialists (TSSes and BSCs) feels like an invasion of privacy because their "office" is my home. SMILE's primary TSS is a soft-spoken mother type. In fact, she has grown children. I like her very much and so does SMILE. So much in fact, SMILE recently slipped when addressing her and called her "Mommy." I know it was just a slip. SMILE often calls me "Daddy" before correcting himself. But...wow...that one hurt.
So, maybe my excitement and sense of accomplishment over SMILE's most recent meltdown are understandable. I was chatting with Ms. TSS while SMILE finished his lunch and I mentioned the kindergarten graduation concert that's scheduled for tomorrow morning. Suddenly, SMILE burst into tears and announced that he hated the concert and was afraid to go on stage. I was floored. SMILE and his class have been practicing every day this week. Just yesterday, SMILE was excited to tell me about where he was standing on stage. My little guy escalated FAST and was in a full screaming, pushing, sobbing fit. I tried talking to him while Ms. TSS quickly doodled a sketch of children on a stage and parents applauding. Darn, I thought. Why didn't I think of that? But SMILE went on wailing, calling the concert stupid, insisting he hated it, and that he would miss me too much to do it. I sat there helplessly while SMILE ranted and shot down every attempt Ms. TSS and I made to reason with him. We figured out he might not like the word "concert" so we stopped using it and reinforced that he's just going to do the same thing he did today, yesterday, and the day before. We tried to temp him with the promise of the refreshments the school was putting out for the graduates and their families. Nothing worked. He pulled on the lanyard around my neck, covered my mouth while I talked, and twisted my fingers. I caught Ms. TSS's eye and pulled SMILE onto my lap before she could intervene.
And then he said it. That one comment I waited for without knowing previously what it would be. It would be the key to reaching him, distracting him, and ending the chaos.
He wailed, "But I thought it was next time."
"What does 'next time' mean, SMILE?" My mind raced to chase this thought down any track he was going down.
He took the drama down a notch and was quiet before answering. "It means 'a long time.'"
"You thought the concert would be a long time from now?"
"Yes," he whined. His little lip trembled and I gave him a hug.
"Oh," I smiled. "It is a long time. It's not today." I turned him in my arms so he could look at me if he wanted to. And it breaks my heart because he does look me in the eyes when we find ourselves in these situations. It's as if he's trusting that I will know what to say to help him and he really wants to hear it. "It's not this morning. It's not lunch time or this afternoon. It's not snack time. It's not dinner time. It's not story time. It's not even bed time. There's a lot of time before singing. And tomorrow, you'll go to school, sing on stage, and then have snacks. Do you think they'll have coffee for me?"
"Well," he said, his voice clear and calm, "We'll have to see about that."
"Yes, we'll have to see," I said before releasing him so he could go on to one of Ms. TSS's activities.
I hate when SMILE tantrums. Sure, I don't like the noise, but that's not it. I've tried to articulate it before but I think I can now after this experience because a TSS was here to see it this time. When SMILE really tantrums, he gets lost. My sweet, accommodating, loving little boy sinks below his autism and he can't control himself. And, for once, the TSS's knowledge of the right thing to do doesn't work because she's not following her heart. But I am. And that's why I'm not going to struggle to find my place any more. Because I'm the one that found SMILE today.
But working with even the most sensitive and compassionate behavioral specialists (TSSes and BSCs) feels like an invasion of privacy because their "office" is my home. SMILE's primary TSS is a soft-spoken mother type. In fact, she has grown children. I like her very much and so does SMILE. So much in fact, SMILE recently slipped when addressing her and called her "Mommy." I know it was just a slip. SMILE often calls me "Daddy" before correcting himself. But...wow...that one hurt.
So, maybe my excitement and sense of accomplishment over SMILE's most recent meltdown are understandable. I was chatting with Ms. TSS while SMILE finished his lunch and I mentioned the kindergarten graduation concert that's scheduled for tomorrow morning. Suddenly, SMILE burst into tears and announced that he hated the concert and was afraid to go on stage. I was floored. SMILE and his class have been practicing every day this week. Just yesterday, SMILE was excited to tell me about where he was standing on stage. My little guy escalated FAST and was in a full screaming, pushing, sobbing fit. I tried talking to him while Ms. TSS quickly doodled a sketch of children on a stage and parents applauding. Darn, I thought. Why didn't I think of that? But SMILE went on wailing, calling the concert stupid, insisting he hated it, and that he would miss me too much to do it. I sat there helplessly while SMILE ranted and shot down every attempt Ms. TSS and I made to reason with him. We figured out he might not like the word "concert" so we stopped using it and reinforced that he's just going to do the same thing he did today, yesterday, and the day before. We tried to temp him with the promise of the refreshments the school was putting out for the graduates and their families. Nothing worked. He pulled on the lanyard around my neck, covered my mouth while I talked, and twisted my fingers. I caught Ms. TSS's eye and pulled SMILE onto my lap before she could intervene.
And then he said it. That one comment I waited for without knowing previously what it would be. It would be the key to reaching him, distracting him, and ending the chaos.
He wailed, "But I thought it was next time."
"What does 'next time' mean, SMILE?" My mind raced to chase this thought down any track he was going down.
He took the drama down a notch and was quiet before answering. "It means 'a long time.'"
"You thought the concert would be a long time from now?"
"Yes," he whined. His little lip trembled and I gave him a hug.
"Oh," I smiled. "It is a long time. It's not today." I turned him in my arms so he could look at me if he wanted to. And it breaks my heart because he does look me in the eyes when we find ourselves in these situations. It's as if he's trusting that I will know what to say to help him and he really wants to hear it. "It's not this morning. It's not lunch time or this afternoon. It's not snack time. It's not dinner time. It's not story time. It's not even bed time. There's a lot of time before singing. And tomorrow, you'll go to school, sing on stage, and then have snacks. Do you think they'll have coffee for me?"
"Well," he said, his voice clear and calm, "We'll have to see about that."
"Yes, we'll have to see," I said before releasing him so he could go on to one of Ms. TSS's activities.
I hate when SMILE tantrums. Sure, I don't like the noise, but that's not it. I've tried to articulate it before but I think I can now after this experience because a TSS was here to see it this time. When SMILE really tantrums, he gets lost. My sweet, accommodating, loving little boy sinks below his autism and he can't control himself. And, for once, the TSS's knowledge of the right thing to do doesn't work because she's not following her heart. But I am. And that's why I'm not going to struggle to find my place any more. Because I'm the one that found SMILE today.
Wednesday, June 1, 2011
Hypnosis Confusion
Sometimes I have to laugh. WINK's anxiety waxes and wanes and, right now, we are in high tide territory, indeed. Our night-time routine consists of three stories, tickles, 110 kisses, and at least one question ("Do I feed my fish tonight?") asked three different ways. Very often, DAD and I will send the little tyke to bed only to hear a knock on our door a few minutes later. Why? So he can ask the same question again, or make sure he did, in fact, get 26 kisses from DAD. Or maybe he will just have a string of questions he needs to get out or a series of statements he has to say. Needless to say, WINK is a tired little boy in the morning because it takes so long for him to turn the volume down in his brain.
A good friend just recommended a simple hypnosis technique to me. She instructed me to give WINK a small ball to hold in his hand and have him toss it to the other hand, back and forth. The idea is that the activity stimulates both sides of the brain and, therefore, reduces anxiety. GREAT! I rushed home, gave him a ball, and waited for the magic to happen.
Well, he liked the ball. And he did seem less anxious. He went to bed smiling, in fact. Unfortunately, he didn't go to bed before asking me every question he could think of about the ball's color, construction, physics, environmental science, the origin of myth, the secret of life, on and on. Really, I'm only exaggerating slightly.
WINK just poked his head in my room. "Mommy, I just realized I didn't tell you good night." (YES HE DID!!!!!!)
"Good night, WINK."
"I love you." (Yep, we covered that, too).
"I love you, too"
"I wanted to see if you were still working." (Yes, he's still going...)
"Yes, honey. I'm still working."
"Well, you don't have to tell me that because my eyes already told me." (@#^&#%!)
"Goodnight, sweetheart."
"Goodnight. I love you.... (Yeah...this goes on for a bit....)
I will have him try the ball trick again soon. As soon as I'm ready to relinquish the ball.
A good friend just recommended a simple hypnosis technique to me. She instructed me to give WINK a small ball to hold in his hand and have him toss it to the other hand, back and forth. The idea is that the activity stimulates both sides of the brain and, therefore, reduces anxiety. GREAT! I rushed home, gave him a ball, and waited for the magic to happen.
Well, he liked the ball. And he did seem less anxious. He went to bed smiling, in fact. Unfortunately, he didn't go to bed before asking me every question he could think of about the ball's color, construction, physics, environmental science, the origin of myth, the secret of life, on and on. Really, I'm only exaggerating slightly.
WINK just poked his head in my room. "Mommy, I just realized I didn't tell you good night." (YES HE DID!!!!!!)
"Good night, WINK."
"I love you." (Yep, we covered that, too).
"I love you, too"
"I wanted to see if you were still working." (Yes, he's still going...)
"Yes, honey. I'm still working."
"Well, you don't have to tell me that because my eyes already told me." (@#^&#%!)
"Goodnight, sweetheart."
"Goodnight. I love you.... (Yeah...this goes on for a bit....)
I will have him try the ball trick again soon. As soon as I'm ready to relinquish the ball.
Sunday, May 22, 2011
Harsh Reality
I was looking at an assembled puzzle with SMILE the other day. He doesn't like it when puzzles are taken apart now. Anyway, this one was all about animals from Australia. We sat on the floor naming the animals, "this one's a wallaby, this one's an armadillo," for a while before we got to "kangaroo." I was impressed when he knew what a baby kangaroo is called and, in a fit of playfulness, slapped my legs and told my little joey to sit on my lap. He smiled his dazzling smile, got up, and jumped- feet first- onto my lap. OUCH!
The harsh reality is that my boys are getting physically bigger and stronger. When SMILE tantrums or is even playful, he can hurt now. It hasn't happened yet but I think it's a matter of time before I get a black eye. Not that he intentionally hits. He just doesn't have the slightest notion of space or his strength, so it's easy to get hit by a flailing arm or get head-butted while he shakes his head. Even a hug can be a little dangerous because I never know when he's going to squeeze my neck too tight, hang from my neck, or cause me to fall when he wraps himself around me. I've taken to finding a wall, banister, chair, etc. any time he comes near me just in case. WINK has never struck out during a tantrum but he, too, can be too rough when he's just trying to be affectionate.
Another harsh reality is that, as they get older, my boys are trying to take more liberties without being emotionally ready to do it. Case in point, WINK will try a challenging ladder at the playground and then scream and sob when he gets spooked at the top. Or SMILE will walk out of the house without me (something he should not do) but then get scared when he turns and I'm not right behind him. As they get older, their behavior seems more and more out of place and I'm slowly realizing that my beautiful boys are not just "typical" children in disguise. This is real and will continue to get realer still....
The harsh reality is that my boys are getting physically bigger and stronger. When SMILE tantrums or is even playful, he can hurt now. It hasn't happened yet but I think it's a matter of time before I get a black eye. Not that he intentionally hits. He just doesn't have the slightest notion of space or his strength, so it's easy to get hit by a flailing arm or get head-butted while he shakes his head. Even a hug can be a little dangerous because I never know when he's going to squeeze my neck too tight, hang from my neck, or cause me to fall when he wraps himself around me. I've taken to finding a wall, banister, chair, etc. any time he comes near me just in case. WINK has never struck out during a tantrum but he, too, can be too rough when he's just trying to be affectionate.
Another harsh reality is that, as they get older, my boys are trying to take more liberties without being emotionally ready to do it. Case in point, WINK will try a challenging ladder at the playground and then scream and sob when he gets spooked at the top. Or SMILE will walk out of the house without me (something he should not do) but then get scared when he turns and I'm not right behind him. As they get older, their behavior seems more and more out of place and I'm slowly realizing that my beautiful boys are not just "typical" children in disguise. This is real and will continue to get realer still....
Wednesday, May 4, 2011
The Great Bee Escape
Sometimes my SMILE is so cute, I just can't stop hugging and kissing him. He and I had taken WINK to an after school activity the other day. When we returned home, just SMILE and I, my little man froze in our driveway.
"What's the matter, SMILE?" I asked, resting my hand on his back because I could see he was nervous.
"There are bees in the plant," he said. I looked over to a small bush in front of our stairs. I didn't see anything, but I've learned to trust SMILE's heightened senses.
I walked over to the steps to illustrate that I wasn't afraid at all and hoped he would follow. No such luck. I tried to reason with him by telling him there was no other way to get into the house, so he'd have to walk passed the bush. He gave me a look that plainly stated, "Hey, not my problem, lady," even though he didn't have the words to say it...
And then, inspiration! I took off my black sweater and wrapped it around his head, neck, and torso. "You look like a shadow, SMILE. You can walk right by the bees and they won't even see you." It worked. He confidently strode passed, up the stairs, and into the house. Once safely inside, he declared, "Mommy, I have an idea..." I'm not quite sure what he said after that, exactly, but I heard "sweater" and "every day."
So, naturally, that means I forgot it when we left the house the next morning. Once again, he froze. I immediately realized I had messed up. My mind scrambled as I looked at SMILE standing stiff and unmoving in his white polo shirt. Hmmm...
"SMILE," I said, "You can walk right passed those bees because...you look like a cloud and they won't even see you." And it worked.
Now all I have to do is make sure he only wears shirts that are black, white, or blue (for the sky) and I should be set.
"What's the matter, SMILE?" I asked, resting my hand on his back because I could see he was nervous.
"There are bees in the plant," he said. I looked over to a small bush in front of our stairs. I didn't see anything, but I've learned to trust SMILE's heightened senses.
I walked over to the steps to illustrate that I wasn't afraid at all and hoped he would follow. No such luck. I tried to reason with him by telling him there was no other way to get into the house, so he'd have to walk passed the bush. He gave me a look that plainly stated, "Hey, not my problem, lady," even though he didn't have the words to say it...
And then, inspiration! I took off my black sweater and wrapped it around his head, neck, and torso. "You look like a shadow, SMILE. You can walk right by the bees and they won't even see you." It worked. He confidently strode passed, up the stairs, and into the house. Once safely inside, he declared, "Mommy, I have an idea..." I'm not quite sure what he said after that, exactly, but I heard "sweater" and "every day."
So, naturally, that means I forgot it when we left the house the next morning. Once again, he froze. I immediately realized I had messed up. My mind scrambled as I looked at SMILE standing stiff and unmoving in his white polo shirt. Hmmm...
"SMILE," I said, "You can walk right passed those bees because...you look like a cloud and they won't even see you." And it worked.
Now all I have to do is make sure he only wears shirts that are black, white, or blue (for the sky) and I should be set.
Sunday, May 1, 2011
Sometimes I wonder....
I think that age old curse that parents tell their children really works. You know the one: The "I hope you have children just like you when you grow up" one. I can come up with so many examples; WINK's dizzying argument style, SMILE's easy...well...smile, and their general manners. But I always laugh out loud when one of my boys says something that stops me in my tracks with indisputable cosmic justice.
I just had an autism encounter with SMILE. My little guy melted down hard because I gave him and his brother some french fries to share for a snack. I thought I had it all very well planned out; I divided the fries into two equal parts (yes, I counted), and presented them in the styro-foam take home box from the pizzeria. I didn't factor in that they had been my and SMILE's fries, left over from a Mommy and Me lunch date I had with my little man a few days ago, and that SMILE would not want to share (yeah, yeah, yeah...I know). But, WOW, he melted down. I mean an instant crying, total devastation breakdown.
Now, I'm patient with both of my boys when they let their autism flags fly high, but I draw a line when either one gets physical or mean. SMILE did both. He pulled on my arm, hit my hands, and grabbed my face, the entire time screaming. So, I pulled his beloved Wii remote out of his hands. Now...you have to understand...the Wii is his thing. All autistic kids have something that is valued above all else. The thing that will get their attention, hit them where it hurts (figuratively, of course), and drive home any lesson. But, taking it away comes at a price. Any tantrum will escalate because taking away that thing is a betrayal that is too great to tolerate quietly.
SMILE yowled and kicked. He cried that it wasn't my turn and I had to wait for my turn. I calmly agreed that it wasn't my turn, but I had taken the remote away because he hit me.
Scream.
"But, once you calm down,"
Scream!
{ahem} "Once you calm down and say you're sorry, you can have the Wii remote back."
Scream!!! "But...but...it's mine and you've taken it quite enough!
Ironically, my inability to stop laughing was what snapped SMILE out of his tantrum enough to apologize. I gave back his remote and walked out of the room to where DAD was sitting.
"He's so much your son," he beamed.
I know. I think I should call my parents and apologize.
I just had an autism encounter with SMILE. My little guy melted down hard because I gave him and his brother some french fries to share for a snack. I thought I had it all very well planned out; I divided the fries into two equal parts (yes, I counted), and presented them in the styro-foam take home box from the pizzeria. I didn't factor in that they had been my and SMILE's fries, left over from a Mommy and Me lunch date I had with my little man a few days ago, and that SMILE would not want to share (yeah, yeah, yeah...I know). But, WOW, he melted down. I mean an instant crying, total devastation breakdown.
Now, I'm patient with both of my boys when they let their autism flags fly high, but I draw a line when either one gets physical or mean. SMILE did both. He pulled on my arm, hit my hands, and grabbed my face, the entire time screaming. So, I pulled his beloved Wii remote out of his hands. Now...you have to understand...the Wii is his thing. All autistic kids have something that is valued above all else. The thing that will get their attention, hit them where it hurts (figuratively, of course), and drive home any lesson. But, taking it away comes at a price. Any tantrum will escalate because taking away that thing is a betrayal that is too great to tolerate quietly.
SMILE yowled and kicked. He cried that it wasn't my turn and I had to wait for my turn. I calmly agreed that it wasn't my turn, but I had taken the remote away because he hit me.
Scream.
"But, once you calm down,"
Scream!
{ahem} "Once you calm down and say you're sorry, you can have the Wii remote back."
Scream!!! "But...but...it's mine and you've taken it quite enough!
Ironically, my inability to stop laughing was what snapped SMILE out of his tantrum enough to apologize. I gave back his remote and walked out of the room to where DAD was sitting.
"He's so much your son," he beamed.
I know. I think I should call my parents and apologize.
Thursday, April 28, 2011
Well, that went better than I thought...
Ever since my WINK was diagnosed with Aspergers, I've dreaded the day DAD and I would have to tell him. Ironically, he knows SMILE has autism. SMILE will grow up knowing that he has autism. I proudly advertise that my six year old, the one over there simultaneously spinning, nodding, and clapping his hands, has autism. But I had struggled with the idea of talking about WINK's Aspergers diagnosis. I've always been equally proud of my amazing older son but I was afraid, because of his age, that WINK would be more apt to think something is "wrong" with him instead of concentrating on what is so overwhelmingly right.
And then, right in the middle of my mother-in-law's living room, WINK looked up at me and asked me to explain, again, what autism is. I did. He asked if SMILE would ever not have autism. I said, no, SMILE would always have it but he would learn to handle his emotions differently. He pondered this and announced that he believes SMILE is "losing his autism" because he is sharing more and yelling less. I hugged my little professor/sage for being so insightful and told him that I thought he was right.
And then, with perfect eye contact, WINK bluntly asked, "Do I have autism?"
I've never wanted to lie more. But I looked into his huge eyes and...waffled. "Do you think you do?" I asked.
"I don't know. Do I have autism?" When I hesitated again, my beautiful eight year old amazed me by saying, "It's confusing isn't it?"
"Yeah, WINK," I sighed, "it is a bit." And, yet again, my heart swelled with pride and empathy for my son. I prayed quickly that he would take the news well, smiled, and said, "...Yes. You do."
I waited a few moments and asked him how he felt. He seemed to consider the question and said, finally, "happy."
I'll never know what emotions he felt, if any, in those moments. It's possible that his rational mind processed the information like it was nothing more than a puzzle to solve or a case of scientific cause and effect. He could have been simply giving me what he thought was the best answer. It's common with Aspergers children to try to say the "right" thing. He could have been thinking, Answering "happy" has yielded good results in the past, so...why not try it again? But it's also possible that he felt relieved to have an honest, straight forward answer. I'd like to believe that.
"But," I added, "Your type of autism is called Aspergers." His eyes lit up and he covered up his smile and bulging cheeks. "It sounds funny, right?" He giggled. "I know," I said, "It sounds like I should order you at a diner with a side of fries."
He dissolved into a laughing fit. It wasn't THAT funny. I really should have seen this next part coming: When he calmed down enough to talk, my glorious, very much an eight year old boy, declared, "I have 'ass-burgers!'" Over and over again.
We've never spoken of it since. DAD and I have asked, but WINK doesn't have any questions. Slightly shell-shocked, I've moved on, too. Telling him was the right thing to do. But I still have never wanted anything to be less true.
And then, right in the middle of my mother-in-law's living room, WINK looked up at me and asked me to explain, again, what autism is. I did. He asked if SMILE would ever not have autism. I said, no, SMILE would always have it but he would learn to handle his emotions differently. He pondered this and announced that he believes SMILE is "losing his autism" because he is sharing more and yelling less. I hugged my little professor/sage for being so insightful and told him that I thought he was right.
And then, with perfect eye contact, WINK bluntly asked, "Do I have autism?"
I've never wanted to lie more. But I looked into his huge eyes and...waffled. "Do you think you do?" I asked.
"I don't know. Do I have autism?" When I hesitated again, my beautiful eight year old amazed me by saying, "It's confusing isn't it?"
"Yeah, WINK," I sighed, "it is a bit." And, yet again, my heart swelled with pride and empathy for my son. I prayed quickly that he would take the news well, smiled, and said, "...Yes. You do."
I waited a few moments and asked him how he felt. He seemed to consider the question and said, finally, "happy."
I'll never know what emotions he felt, if any, in those moments. It's possible that his rational mind processed the information like it was nothing more than a puzzle to solve or a case of scientific cause and effect. He could have been simply giving me what he thought was the best answer. It's common with Aspergers children to try to say the "right" thing. He could have been thinking, Answering "happy" has yielded good results in the past, so...why not try it again? But it's also possible that he felt relieved to have an honest, straight forward answer. I'd like to believe that.
"But," I added, "Your type of autism is called Aspergers." His eyes lit up and he covered up his smile and bulging cheeks. "It sounds funny, right?" He giggled. "I know," I said, "It sounds like I should order you at a diner with a side of fries."
He dissolved into a laughing fit. It wasn't THAT funny. I really should have seen this next part coming: When he calmed down enough to talk, my glorious, very much an eight year old boy, declared, "I have 'ass-burgers!'" Over and over again.
We've never spoken of it since. DAD and I have asked, but WINK doesn't have any questions. Slightly shell-shocked, I've moved on, too. Telling him was the right thing to do. But I still have never wanted anything to be less true.
Wednesday, April 13, 2011
Deep breath
Once again, I have worried myself SICK over nothing. Today's IEP meeting went very well. SMILE won't qualify for an aid in the classroom but the speech therapist and the occupational therapists can "push in" to the classroom (which, I know know, means they will spend time with him in the classroom a few times a month to better gauge his progress). I mentioned that I'm concerned about certain social aspects- I saw SMILE try to initiate dialogue during center time but none of his group mates responded to him- and they will start to address that as well. Soon, SMILE will be able to take classroom friends with him to some speech sessions so that they can get to know the little guy behind the strange looking behavior.
Funny thing is, after it was all done, I turned to the BSC who put me in a panic two weeks ago and said, "That went much better than I thought." Her reply? "Oh, I know you were afraid that they would pull him out of the mainstream class, but I knew you had nothing to worry about."
!!!!!!!!WHAT?????
Funny thing is, after it was all done, I turned to the BSC who put me in a panic two weeks ago and said, "That went much better than I thought." Her reply? "Oh, I know you were afraid that they would pull him out of the mainstream class, but I knew you had nothing to worry about."
!!!!!!!!WHAT?????
Wednesday, April 6, 2011
"My son has an IEP and I'm not afraid to use it"
I'm very nervous about an upcoming IEP meeting (IEP stands for Individual Education Plan) at the boys' school. This one is for my little SMILE. I've been to bunches, they're pretty routine, but this one will be different. I'm pretty sure the IEP team (teacher, occupational/speech therapist, principal, rep from the special ed branch of our school district) will recommend removing SMILE from the mainstream classroom for next year.
What I THINK that means is that they will want to give SMILE time in the "resource room" (the PC term for what was "the trailer" in my day) every day. The rationale for this will be that SMILE loses focus easily, needs a lot of verbal prompts to complete tasks, and struggles to complete four step assessments- that almost always involve tasks he isn't confident in like using scissors, coloring, and writing- while in independent learning centers (the teacher isn't working with that group) at the same rate as his classmates. The resource room, I'm pretty sure they will argue, will give him an opportunity to work at his own pace.
But...SMILE is meeting his academic standards and exceeding some. The little cutie knows his stuff. Why, I'm pretty sure I'll argue, isn't SMILE getting alternate assessments (a worksheet with only two steps that doesn't have such a strong emphasis on fine motor skills, for example) every day in class? Won't taking him out of class so he can spend his time cutting pictures out of magazines or shapes from the bottom of the page be a waste of his time since he already knows the content knowledge (in this case, phonics) the assignment is trying to reinforce? I'm not suggesting that handwriting and scissor skills aren't important (although most adults use computers and I can't recall the last time I HAD to make a collage or a snowflake), but SMILE already goes to occupational therapy for fine motor skill deficits. Why can't he just work to improve them there and at home? Isn't it feasible that, over time, he could fall behind academically because of all the actual teaching time he'd be missing? Sure, he may learn to be a scissors master but that doesn't seem to be a fair trade-off.
So, I'll have to see. SMILE's IEP team may be supportive. SMILE's present and future teachers may be willing to try a high number of in-class modifications and alternate assessment tools. They may all see him as I do: an amazingly bright little boy who will try hard for you if you try hard for him. And then again...
I just found out this afternoon that my request to observe SMILE in class before the IEP meeting has been approved. That's a good sign since parents aren't typically allowed to do so. I, at least, feel assured that they are ready to accommodate me.
...And I think they know it's only the beginning.
What I THINK that means is that they will want to give SMILE time in the "resource room" (the PC term for what was "the trailer" in my day) every day. The rationale for this will be that SMILE loses focus easily, needs a lot of verbal prompts to complete tasks, and struggles to complete four step assessments- that almost always involve tasks he isn't confident in like using scissors, coloring, and writing- while in independent learning centers (the teacher isn't working with that group) at the same rate as his classmates. The resource room, I'm pretty sure they will argue, will give him an opportunity to work at his own pace.
But...SMILE is meeting his academic standards and exceeding some. The little cutie knows his stuff. Why, I'm pretty sure I'll argue, isn't SMILE getting alternate assessments (a worksheet with only two steps that doesn't have such a strong emphasis on fine motor skills, for example) every day in class? Won't taking him out of class so he can spend his time cutting pictures out of magazines or shapes from the bottom of the page be a waste of his time since he already knows the content knowledge (in this case, phonics) the assignment is trying to reinforce? I'm not suggesting that handwriting and scissor skills aren't important (although most adults use computers and I can't recall the last time I HAD to make a collage or a snowflake), but SMILE already goes to occupational therapy for fine motor skill deficits. Why can't he just work to improve them there and at home? Isn't it feasible that, over time, he could fall behind academically because of all the actual teaching time he'd be missing? Sure, he may learn to be a scissors master but that doesn't seem to be a fair trade-off.
So, I'll have to see. SMILE's IEP team may be supportive. SMILE's present and future teachers may be willing to try a high number of in-class modifications and alternate assessment tools. They may all see him as I do: an amazingly bright little boy who will try hard for you if you try hard for him. And then again...
I just found out this afternoon that my request to observe SMILE in class before the IEP meeting has been approved. That's a good sign since parents aren't typically allowed to do so. I, at least, feel assured that they are ready to accommodate me.
...And I think they know it's only the beginning.
Thursday, March 31, 2011
Breakthroughs
For the first time E-V-E-R, WINK asked three classmates to play on the recess yard. AND THEY SAID 'YES"!!! This is huge progress for him.
I told WINK to find his shoes so he could help me get him ready in the morning. I was busy doing other things when WINK yelled "I found them, Mommy." I continued doing what I was doing, looked over several minutes later, and was stunned that my shoeless WINK was watching TV.
{Sigh}...Serves me right: I told him to find them but not to put them on.
SMILE is improving every day. His little face is extremely expressive when he genuinely feels an emotion. He beams when he is happy and breaks hearts when he's sad. But when he is asked to make a certain face, he often looks maniacal. But now he can imitate facial expressions that almost resemble the intended emotion. I secretly love his goofy, screwed up faces though.
I told WINK to find his shoes so he could help me get him ready in the morning. I was busy doing other things when WINK yelled "I found them, Mommy." I continued doing what I was doing, looked over several minutes later, and was stunned that my shoeless WINK was watching TV.
{Sigh}...Serves me right: I told him to find them but not to put them on.
SMILE is improving every day. His little face is extremely expressive when he genuinely feels an emotion. He beams when he is happy and breaks hearts when he's sad. But when he is asked to make a certain face, he often looks maniacal. But now he can imitate facial expressions that almost resemble the intended emotion. I secretly love his goofy, screwed up faces though.
Tuesday, March 29, 2011
Difficult thoughts on a difficult subject
I finished HOUSE RULES last night- I stayed up late to get to the end- and I have to report that I liked it from the point of view of a parent with children with ASDs. I can't, of course, give away the ending or reveal any plot twists or points. I don't want to critique the plot any way. What I can say is that my copy is full of comments in the margins and in that empty page space at the end of some chapters. Comments like: "Wow!" and "Been there," or "That's so true" are everywhere. It was a relief to read passages about Jacob's meltdowns and Emma's (his mother) observations. Every time I recognized my little WINK or SMILE in what I was reading, I felt reassured that DAD and I are on the right track. Because, as Picoult points out, there is no blood test for autism or Aspergers, and I do live with a small nagging doubt ("What if they're wrong") even as I put my faith in teams of professionals.
SMILE is easier to label (relax! You know what I mean). He spins, he stims (repetitive movements or sounds), he tantrums big time. He has very little awareness of personal space- or just assumes that everyone would welcome him in theirs- and he is very controlling. He has had some interesting sensory issues: a period where he couldn't wear jeans, a time that he couldn't get wet, a few months where he couldn't see previews in movies. My little guy is probably high functioning, but that boy has definitely fallen into the spectrum pool and has tasted the rainbow. Jacob has many of the same "quirks" but to a greater extent. This makes me think that either Jacob has high functioning autism or SMILE has Aspergers. Then again, many professionals believe it's the same thing and almost all that I've met cringe when they are pushed to categorize a child at all.
But WINK...does SOME of that but not to the same extent. It's when I tell people that WINK has Aspergers that I'm given that "oh stop looking for problems" look. They point out that he's such a pleasure to have in class, in an after school activity, or over their house. "He did very well for me/here/with us," they almost all say. That's why I'm so happy about this book. Suddenly there's a character who gets confused because he interprets things literally, gets so jumbled that he can't organize his thoughts to make a simple request outside of his comfort zone, and has a dry humor that makes the people who love him laugh out loud. A character who desperately wants to fit in but doesn't know how, who is easily manipulated because he believes that every person's smile means they like him, and who gets ridiculed and laughed at but doesn't understand why. And, thankfully, Picoult highlights the heartbreak Aspie parents feel while they watch their children struggle to learn social skills that other children are born knowing or effortlessly learn before pre-school.
And, like Emma, I adore my boys and see their strengths before I see their weaknesses. I put them first because that position in my life is their birthright. But, unlike Emma, I already make time for myself and I've reached out to friends who have been wonderful and patient while I figure this out. But I'm fortunate. Despite living in a situation that boasts an 80% divorce rate, I have an amazing husband who carries the other side of the banner to be our boys' fans. And I think this makes all the difference.
SMILE is easier to label (relax! You know what I mean). He spins, he stims (repetitive movements or sounds), he tantrums big time. He has very little awareness of personal space- or just assumes that everyone would welcome him in theirs- and he is very controlling. He has had some interesting sensory issues: a period where he couldn't wear jeans, a time that he couldn't get wet, a few months where he couldn't see previews in movies. My little guy is probably high functioning, but that boy has definitely fallen into the spectrum pool and has tasted the rainbow. Jacob has many of the same "quirks" but to a greater extent. This makes me think that either Jacob has high functioning autism or SMILE has Aspergers. Then again, many professionals believe it's the same thing and almost all that I've met cringe when they are pushed to categorize a child at all.
But WINK...does SOME of that but not to the same extent. It's when I tell people that WINK has Aspergers that I'm given that "oh stop looking for problems" look. They point out that he's such a pleasure to have in class, in an after school activity, or over their house. "He did very well for me/here/with us," they almost all say. That's why I'm so happy about this book. Suddenly there's a character who gets confused because he interprets things literally, gets so jumbled that he can't organize his thoughts to make a simple request outside of his comfort zone, and has a dry humor that makes the people who love him laugh out loud. A character who desperately wants to fit in but doesn't know how, who is easily manipulated because he believes that every person's smile means they like him, and who gets ridiculed and laughed at but doesn't understand why. And, thankfully, Picoult highlights the heartbreak Aspie parents feel while they watch their children struggle to learn social skills that other children are born knowing or effortlessly learn before pre-school.
And, like Emma, I adore my boys and see their strengths before I see their weaknesses. I put them first because that position in my life is their birthright. But, unlike Emma, I already make time for myself and I've reached out to friends who have been wonderful and patient while I figure this out. But I'm fortunate. Despite living in a situation that boasts an 80% divorce rate, I have an amazing husband who carries the other side of the banner to be our boys' fans. And I think this makes all the difference.
Wednesday, March 23, 2011
I should be sleeping
Life has been interesting lately. DAD was called into work two Sundays ago, was gone all day, and our boys are just settling down into "normal" again. WINK and SMILE were fantastic that day, didn't give me a bit of drama, but the following week was a spiral into madness. SMILE had four major meltdowns (to qualify as a meltdown, the tantrum needs to be more than three minutes and involve at least two of the following: crying, screaming, pushing, kicking, pinching, hitting) and WINK got weepy over ridiculous Mommy errors (seriously, crying because I poured milk on his Lucky Charms...).
At least, I think DAD's absence was the break in their routine that pushed them over the edge. But then a bunch of parents gave us something to think about: A lot of spectrum kids get fluky when the clocks change. HUH! Never considered that and the clocks DID change the same weekend that DAD was called away.
Oh! Here we go again. A few moments ago, DAD was called in to the boys' room. DAD just walked back in to our room with a pathetically tired SMILE but DAD is smiling wide. "I can't argue with this," he beams. SMILE is wiping little tears from his eyes, holding his daddy's hand and whimpering, "But when I'm sleeping I can't be with you."
Looks like I'm going to be up for a while. SMILE is on my side of the bed.
At least, I think DAD's absence was the break in their routine that pushed them over the edge. But then a bunch of parents gave us something to think about: A lot of spectrum kids get fluky when the clocks change. HUH! Never considered that and the clocks DID change the same weekend that DAD was called away.
Oh! Here we go again. A few moments ago, DAD was called in to the boys' room. DAD just walked back in to our room with a pathetically tired SMILE but DAD is smiling wide. "I can't argue with this," he beams. SMILE is wiping little tears from his eyes, holding his daddy's hand and whimpering, "But when I'm sleeping I can't be with you."
Looks like I'm going to be up for a while. SMILE is on my side of the bed.
Sunday, March 13, 2011
So far so good...
There are parts of this book that are so right it is scary. But I'm going to do some research about some points. I'll be the first to admit that I don't know everything about autistic kids or Aspies, I just know my autistic child and my Aspie, but there are a few things I've read in House Rules that are surprising. But so far so good.
Thursday, March 10, 2011
My new homework assignment
Jodi Picoult's House Rules, published in 2010, was released the same month my little SMILE was diagnosed with an ASD (Autism Spectrum Disorder). Part of me was curious. After all, the main character, Jacob, has Aspergers and I already had an evaluation appointment for WINK. Maybe I can learn something here.
But most of me was afraid to read it. Jodi Picoult has a very large following and I respect her success. But my last foray into one of her novels, Nineteen Minutes, left me...a bit...frustrated. There were issues, motives, possible resolutions related to the bullying theme that I had hoped she would address but...didn't. The characters could have had more depth and diversity than the jock/bully and nerd/victim stereotypes but they...didn't. There were many good parts and I could have loved the book and found it faultless. But I ...didn't. So, would it really be wise for me, I thought, to read House Rules when, once again, the issue at hand is one I can so strongly relate to? I resolutely decided to avoid the book.
Then a strange thing happened. I was walking into a neighborhood bookstore recently and saw an advertisement in the window. A group of local educators were coming together to discuss House Rules. I looked at the date on the poster. It was two days away. I knew I'd never be able to read it in time but I decided that I'd have to read it.
So, I have about seven pages read, underlined, and annotated so far. My heart is on my sleeve but my interest is piqued. At best, I will continue to feel comforted, reassured, and validated that now countless readers will have a better understanding of the struggles these amazing children, their siblings, and their parents face every day. At worst, I will feel disappointed if Jacob is nothing more than a stereotype of flapping and tantrums or if his mom never becomes more than the put-upon martyr parent. But most of all...I really hope Jacob didn't do the crime he is accused of.
But most of me was afraid to read it. Jodi Picoult has a very large following and I respect her success. But my last foray into one of her novels, Nineteen Minutes, left me...a bit...frustrated. There were issues, motives, possible resolutions related to the bullying theme that I had hoped she would address but...didn't. The characters could have had more depth and diversity than the jock/bully and nerd/victim stereotypes but they...didn't. There were many good parts and I could have loved the book and found it faultless. But I ...didn't. So, would it really be wise for me, I thought, to read House Rules when, once again, the issue at hand is one I can so strongly relate to? I resolutely decided to avoid the book.
Then a strange thing happened. I was walking into a neighborhood bookstore recently and saw an advertisement in the window. A group of local educators were coming together to discuss House Rules. I looked at the date on the poster. It was two days away. I knew I'd never be able to read it in time but I decided that I'd have to read it.
So, I have about seven pages read, underlined, and annotated so far. My heart is on my sleeve but my interest is piqued. At best, I will continue to feel comforted, reassured, and validated that now countless readers will have a better understanding of the struggles these amazing children, their siblings, and their parents face every day. At worst, I will feel disappointed if Jacob is nothing more than a stereotype of flapping and tantrums or if his mom never becomes more than the put-upon martyr parent. But most of all...I really hope Jacob didn't do the crime he is accused of.
Saturday, March 5, 2011
A Hodgepodge of Successes
Ahhh...where to begin? Parent/Teacher conferences were a few nights ago. My boys, both in general education classes, are doing really well and holding their own. They struggle, SMILE with keeping pace with his classmates and WINK with reading comprehension, but they're making strides. Going forward, I'm sure there will be more issues and changes to IEPs, but I've learned to be adaptable which is a miracle right there.
But the best part of the night was the three hour play-date my boys had with a few kids from the boys' school. Don't misunderstand, it was horribly awkward. WINK was a social disaster but our 8 yr old and 6 yr old guests didn't seem to notice. The important thing is that WINK tried to initiate conversations and tried to respond to what they were saying. AND THAT'S PROGRESS! Soon, our guests decided that it was time for my living-room to double as a coliseum for a Gladiator-type ball fight. I'm talking bouncy balls (the kind you sit on and bounce) being swung around like maces and smaller balls being thrown like grenades. Yes, it was potentially dangerous. Sure, it was not my shining Mommy moment. But it was so AMAZING and....little boyish. I swallowed my nerves, sat on my hands, and prayed no one broke a nose. But I let it happen because WINK needed to see it through. He needed to be successful. SMILE didn't play. Instead, he grabbed his Paper Jams guitar and ROCKED OUT with his little self.
But the next day's success was all about my sweet SMILE and his speech therapy re-evaluation. Back in September, SMILE's speech delays (processing what he hears and being able to express his own thoughts) meant that he performed on the same level as a 4 year old (he was almost 6 at the time). Now, five months later from the original testing date, he is performing on a 5 year 3 month level. That's a huge jump! There's still a delay and he'll continue with therapy, but he's going to make it. Just today, SMILE woke up because he had a bad dream. He crawled into bed with DAD and I but when I asked him to tell me about the dream, he said, "Actually Mommy, I don't want to talk about it." My little guy has so much to say, so many beautiful and wonderful thoughts, and I'm so excited because people will soon get to hear them all.
But the best part of the night was the three hour play-date my boys had with a few kids from the boys' school. Don't misunderstand, it was horribly awkward. WINK was a social disaster but our 8 yr old and 6 yr old guests didn't seem to notice. The important thing is that WINK tried to initiate conversations and tried to respond to what they were saying. AND THAT'S PROGRESS! Soon, our guests decided that it was time for my living-room to double as a coliseum for a Gladiator-type ball fight. I'm talking bouncy balls (the kind you sit on and bounce) being swung around like maces and smaller balls being thrown like grenades. Yes, it was potentially dangerous. Sure, it was not my shining Mommy moment. But it was so AMAZING and....little boyish. I swallowed my nerves, sat on my hands, and prayed no one broke a nose. But I let it happen because WINK needed to see it through. He needed to be successful. SMILE didn't play. Instead, he grabbed his Paper Jams guitar and ROCKED OUT with his little self.
But the next day's success was all about my sweet SMILE and his speech therapy re-evaluation. Back in September, SMILE's speech delays (processing what he hears and being able to express his own thoughts) meant that he performed on the same level as a 4 year old (he was almost 6 at the time). Now, five months later from the original testing date, he is performing on a 5 year 3 month level. That's a huge jump! There's still a delay and he'll continue with therapy, but he's going to make it. Just today, SMILE woke up because he had a bad dream. He crawled into bed with DAD and I but when I asked him to tell me about the dream, he said, "Actually Mommy, I don't want to talk about it." My little guy has so much to say, so many beautiful and wonderful thoughts, and I'm so excited because people will soon get to hear them all.
Sunday, February 20, 2011
Well...when he's right, he's right
I don't know if it's WINK's Aspergers or just his snarky personality, but the kid is an insufferable know-it-all. DAD and I remind him several times a day that he does not set the rules for the family, he is not SMILE's parent, he doesn't always have a better approach than DAD and I (never mind the fact that sometimes he does).
So, today has been no exception. After church, DAD surprised the boys with the news that we were going to pick up two new fish for their aquarium. WINK cheered but SMILE whined that he wanted to go right home (very common for him). DAD tried to get him excited but SMILE met his every attempt with "No thank you. We already have fish," or something equally polite in his dissension. WINK piped in while we were still in the church parking lot; "Well, he can go home with Mommy." I shushed WINK, told him that wasn't how we were going to handle this, and DAD agreed. SMILE whined and kicked a bit in the backseat but was well on his way to calming down. We drove into the parking lot of the shopping center and SMILE pumped up the volume a bit. I asked if he wanted to wait in the car with me while DAD and WINK went in to the pet store. He said yes.
Now. I need to explain the nirvana it is when you get an autistic child to agree to a compromise. SMILE was happy with the option I presented. I felt myself relax into the driver's seat, confident that peace would reign.
And then...I hear this little voice, sort of like a Muppet on helium, say, "Or you could just go home with Mommy..." I froze. No, no, no. "But we;re already here," I said. "We'll just..."
And, of course, the chaos resumed. I blew up at my little WINK. I told him I was angry and I reiterated that he needs to stay out of issues that don't involve him. When he said he was just trying to help, I snapped and told him he hadn't helped, that he made it worse, and that, if it were up to me, I wouldn't get him a fish. Now, that was a total "good cop/bad cop" moment. I felt confident that DAD would still get him the fish. I counted on it, really.
Twenty minutes later, we're all back home and DAD took WINK upstairs to have a talk. He wanted him to understand that, even though he got his fish, he and I are a united front and I deserved an apology. WINK came down the stairs and said he was sorry. But DAD hung back, trying hard not to laugh, and motioned for me to follow him into the kitchen.
DAD gave me a run down of the conversation. He had reminded WINK that he hadn't helped the situation, that he's not SMILE's parent, that he has to leave decisions up to us (the parents). WINK said, "I know." DAD asked, exasperated in his retelling, "Well, if you know, why did you do it?" WINK's response?
"Because I'm a KID and kids don't know everything adults do."
Oh. And there it is. That non-negotiable, iron-clad logic of his. No arguing view points for him, no power struggle offered. Just a subtle "Duh" with a hint of "You should know better." I ran into the living room, arms open and laughing. I scooped him into my arms. "You're right, WINK. You are just a kid." And God help me, I thought, when he realizes just how good he is at stopping me in my tracks.
So, today has been no exception. After church, DAD surprised the boys with the news that we were going to pick up two new fish for their aquarium. WINK cheered but SMILE whined that he wanted to go right home (very common for him). DAD tried to get him excited but SMILE met his every attempt with "No thank you. We already have fish," or something equally polite in his dissension. WINK piped in while we were still in the church parking lot; "Well, he can go home with Mommy." I shushed WINK, told him that wasn't how we were going to handle this, and DAD agreed. SMILE whined and kicked a bit in the backseat but was well on his way to calming down. We drove into the parking lot of the shopping center and SMILE pumped up the volume a bit. I asked if he wanted to wait in the car with me while DAD and WINK went in to the pet store. He said yes.
Now. I need to explain the nirvana it is when you get an autistic child to agree to a compromise. SMILE was happy with the option I presented. I felt myself relax into the driver's seat, confident that peace would reign.
And then...I hear this little voice, sort of like a Muppet on helium, say, "Or you could just go home with Mommy..." I froze. No, no, no. "But we;re already here," I said. "We'll just..."
And, of course, the chaos resumed. I blew up at my little WINK. I told him I was angry and I reiterated that he needs to stay out of issues that don't involve him. When he said he was just trying to help, I snapped and told him he hadn't helped, that he made it worse, and that, if it were up to me, I wouldn't get him a fish. Now, that was a total "good cop/bad cop" moment. I felt confident that DAD would still get him the fish. I counted on it, really.
Twenty minutes later, we're all back home and DAD took WINK upstairs to have a talk. He wanted him to understand that, even though he got his fish, he and I are a united front and I deserved an apology. WINK came down the stairs and said he was sorry. But DAD hung back, trying hard not to laugh, and motioned for me to follow him into the kitchen.
DAD gave me a run down of the conversation. He had reminded WINK that he hadn't helped the situation, that he's not SMILE's parent, that he has to leave decisions up to us (the parents). WINK said, "I know." DAD asked, exasperated in his retelling, "Well, if you know, why did you do it?" WINK's response?
"Because I'm a KID and kids don't know everything adults do."
Oh. And there it is. That non-negotiable, iron-clad logic of his. No arguing view points for him, no power struggle offered. Just a subtle "Duh" with a hint of "You should know better." I ran into the living room, arms open and laughing. I scooped him into my arms. "You're right, WINK. You are just a kid." And God help me, I thought, when he realizes just how good he is at stopping me in my tracks.
Saturday, February 12, 2011
When SMILE frowns...
SMILE finally had a tantrum in front of his TSS (Sue) and BSC (Heather). It happened while SMILE was upstairs showing Sue his marble game (a crazy configuration of chutes you send marble down) and Heather and I were downstairs. Heather and I heard a shriek, jumped up, and ran up the stairs to help. I followed Heather into the room and cut in front of her as she made her way to SMILE. Are you kidding me? I thought, Oh no you don't! I stuck my hand out on my side and said, firmer than I expected to, "I'll approach my son."
My poor little guy! He was a sobbing, thrashing mess sitting on the floor amid 50-60 plastic pieces that once made up his beloved game. "It's broken!," "It's ruined!" And of course, he wanted me to put it back together right then and there. I calmly explained that we didn't have the time, it was almost time to pick up WINK, but I would be happy to do it when we got back.
He wasn't a fan of that idea.
I sat there rubbing his back while Sue and Heather discussed us as if we weren't in the room. Finally, Heather suggested I go downstairs, leave SMILE to have his tantrum, and get him a drink.
And I... had... a tantrum. "What he needs," I hissed, "is for me to remain calm and give him love and support through this." Now, I am usually not quite so oppositional. But I think parents have a primal need to be the ones to stop their little ones' pain, distress, confusion. And to be told, however politely, that your way isn't working, that you need help, and that (gasp) someone else can do it better is...well...awful, even if it is not true.
After a few saccharine words from his BSC, and once SMILE quieted down significantly, I relented and went downstairs. Five minutes later, SMILE and Heather walked down the stairs and SMILE was beaming. Damn! I shouted, "Way to go, little man!" as he came to the base of the stairs and put up my hand for a high-five. He smiled but didn't notice my raised hand, didn't make eye contact, and walked past me. It's so hard to not take that stuff personally!
But as quickly as it started, the crisis was over. My SMILE was back, his TSS was shell-shocked, and I had to eat a small slice of humble pie.
But then SMILE sat next to me on the couch and hugged my arm while Sue and Heather told him to do one task after the other. I'm not sure if he wanted to show love, if he was drawing support from being near me, or if he was stalling. But either way, I don't think Heather saw me stick out my tongue.
My poor little guy! He was a sobbing, thrashing mess sitting on the floor amid 50-60 plastic pieces that once made up his beloved game. "It's broken!," "It's ruined!" And of course, he wanted me to put it back together right then and there. I calmly explained that we didn't have the time, it was almost time to pick up WINK, but I would be happy to do it when we got back.
He wasn't a fan of that idea.
I sat there rubbing his back while Sue and Heather discussed us as if we weren't in the room. Finally, Heather suggested I go downstairs, leave SMILE to have his tantrum, and get him a drink.
And I... had... a tantrum. "What he needs," I hissed, "is for me to remain calm and give him love and support through this." Now, I am usually not quite so oppositional. But I think parents have a primal need to be the ones to stop their little ones' pain, distress, confusion. And to be told, however politely, that your way isn't working, that you need help, and that (gasp) someone else can do it better is...well...awful, even if it is not true.
After a few saccharine words from his BSC, and once SMILE quieted down significantly, I relented and went downstairs. Five minutes later, SMILE and Heather walked down the stairs and SMILE was beaming. Damn! I shouted, "Way to go, little man!" as he came to the base of the stairs and put up my hand for a high-five. He smiled but didn't notice my raised hand, didn't make eye contact, and walked past me. It's so hard to not take that stuff personally!
But as quickly as it started, the crisis was over. My SMILE was back, his TSS was shell-shocked, and I had to eat a small slice of humble pie.
But then SMILE sat next to me on the couch and hugged my arm while Sue and Heather told him to do one task after the other. I'm not sure if he wanted to show love, if he was drawing support from being near me, or if he was stalling. But either way, I don't think Heather saw me stick out my tongue.
Wednesday, February 9, 2011
It's never going to happen
Sometimes I love WINK and SMILE's BSC. I've raved about her and her proactive attitude. But then she will say something that is so insane that I want to shake her...violently.
Here's the situation and it's not pretty. SMILE has broadened his repertoire of misbehavior when he is frustrated. Now, instead of grabbing, pushing, and occasionally ramming into me or DAD, he now grabs people around the neck. Now, that sounds scary and it is, especially when it's WINK's little neck in his little bro's grip, but it's not the hair-raising, hold the phone, tranquilize the autistic kid situation it sounds like. It's serious and needs to be dealt with but...I don't think he has any concept that this is worse than grabbing my/DAD's/WINK's arm or shoulder. For whatever reason, he's just become fixated on targeting that part of the body.
As soon as it happened three times (first time is a fluke, second time is a coincidence, third time is a pattern), I told his TSS and BSC because I wanted their input and expertise. What I got was the BSC coming into my home with a written Emergency Action Plan that actually listed "call 911 if injury results" (does anyone actually need to read that to know what to do?) and an attitude that was like a nanny on acid. And, with slow-dawning clarity, I realized that she was judging me. This is no paranoia here...or not all paranoia. Her tone was so condescending as she told me that I need to tell him that's bad behavior (of course!), to be consistent with his consequences (I am), and that I have to be sure not to leave WINK and SMILE alone in a room (as if I'm napping upstairs or something). Obviously.
But what do I do beyond the normal parenting? SMILE doesn't respond to a lot of traditional consequences like "time-outs." He doesn't process them right.. MISS BSC than proceeded to tell me that I'm being manipulated (possible, I have to admit). But I've seen his reactions and I know that I'm stern in my expectations. True...I'm a push over for his face and I can't stand to see it crumble...but I'm no discipline wimp. When my boys have a typical child tantrum, they get the consequences of typically developing children. But when they can't process the cause and effect of what is happening or the severity of what they have done, I relent. I talk and I do what I think is right for my boys. But this isn't a typical child thing and SMILE's intent isn't to do serious harm.
So, MISS BSC's solution? Enforce a "no touching" rule for the boys. And, to my horror, she meant absolutely no touching. No hugging, no hand holding, nothing. Her rationale is that SMILE has to learn how to express his emotions without becoming physical.
And I did something I didn't think I would ever do. I said "no." A flat, no room for negotiation, just is never going to happen, "no." Not only would that be a major step backwards for little boys everywhere, but it would be like a punishment for my boys. They hug all the time. They love each other and only stop expressing it when they are separated at school. By morning, they even end up cuddling in the middle of my mother-in-law's sofa bed when we spend the night. I'm proud of that. Even ecstatic. And if I told them they could no longer show physical affection, no longer kiss and hug, I'm afraid they would become...typical.
For the rest of that session, SMILE kept sitting with his back to his BSC. He picked up on something and it was all I could do to stop myself from high-fiving my littlest man.
Grr. It's so frustrating when people, whoever it is at the time, fail to see the child behind the behavior. But...I can't ignore the behavior either. So, much to the disappointment of my boys, DAD and I have forbidden wrestling and "play-fighting." Poor DAD just started to rough house with his boys in December and has delighted in SMILE's kung fu fighting ever since. But...for now...we need to give peace a chance and the wicked dragon style (or whatever they called it), as awesome as it was to behold, will have to wait.
Here's the situation and it's not pretty. SMILE has broadened his repertoire of misbehavior when he is frustrated. Now, instead of grabbing, pushing, and occasionally ramming into me or DAD, he now grabs people around the neck. Now, that sounds scary and it is, especially when it's WINK's little neck in his little bro's grip, but it's not the hair-raising, hold the phone, tranquilize the autistic kid situation it sounds like. It's serious and needs to be dealt with but...I don't think he has any concept that this is worse than grabbing my/DAD's/WINK's arm or shoulder. For whatever reason, he's just become fixated on targeting that part of the body.
As soon as it happened three times (first time is a fluke, second time is a coincidence, third time is a pattern), I told his TSS and BSC because I wanted their input and expertise. What I got was the BSC coming into my home with a written Emergency Action Plan that actually listed "call 911 if injury results" (does anyone actually need to read that to know what to do?) and an attitude that was like a nanny on acid. And, with slow-dawning clarity, I realized that she was judging me. This is no paranoia here...or not all paranoia. Her tone was so condescending as she told me that I need to tell him that's bad behavior (of course!), to be consistent with his consequences (I am), and that I have to be sure not to leave WINK and SMILE alone in a room (as if I'm napping upstairs or something). Obviously.
But what do I do beyond the normal parenting? SMILE doesn't respond to a lot of traditional consequences like "time-outs." He doesn't process them right.. MISS BSC than proceeded to tell me that I'm being manipulated (possible, I have to admit). But I've seen his reactions and I know that I'm stern in my expectations. True...I'm a push over for his face and I can't stand to see it crumble...but I'm no discipline wimp. When my boys have a typical child tantrum, they get the consequences of typically developing children. But when they can't process the cause and effect of what is happening or the severity of what they have done, I relent. I talk and I do what I think is right for my boys. But this isn't a typical child thing and SMILE's intent isn't to do serious harm.
So, MISS BSC's solution? Enforce a "no touching" rule for the boys. And, to my horror, she meant absolutely no touching. No hugging, no hand holding, nothing. Her rationale is that SMILE has to learn how to express his emotions without becoming physical.
And I did something I didn't think I would ever do. I said "no." A flat, no room for negotiation, just is never going to happen, "no." Not only would that be a major step backwards for little boys everywhere, but it would be like a punishment for my boys. They hug all the time. They love each other and only stop expressing it when they are separated at school. By morning, they even end up cuddling in the middle of my mother-in-law's sofa bed when we spend the night. I'm proud of that. Even ecstatic. And if I told them they could no longer show physical affection, no longer kiss and hug, I'm afraid they would become...typical.
For the rest of that session, SMILE kept sitting with his back to his BSC. He picked up on something and it was all I could do to stop myself from high-fiving my littlest man.
Grr. It's so frustrating when people, whoever it is at the time, fail to see the child behind the behavior. But...I can't ignore the behavior either. So, much to the disappointment of my boys, DAD and I have forbidden wrestling and "play-fighting." Poor DAD just started to rough house with his boys in December and has delighted in SMILE's kung fu fighting ever since. But...for now...we need to give peace a chance and the wicked dragon style (or whatever they called it), as awesome as it was to behold, will have to wait.
Tuesday, February 1, 2011
Say that again...
WINK's thought for the day: "Why do we call icicles that if they're not actually sick?" (Come on, it kind of makes you want to snap your fingers in applause and sip espresso, right?)
SMILE was grumpy with WINK last night after he had to relinquish a toy. WINK said "thank you". I turned to SMILE and said, "Say 'you're welcome' to your brother."" In typical child tradition, where he'll only seem to do what is being asked of him, he turned to WINK and mumbled, "yellow gum."
SMILE was grumpy with WINK last night after he had to relinquish a toy. WINK said "thank you". I turned to SMILE and said, "Say 'you're welcome' to your brother."" In typical child tradition, where he'll only seem to do what is being asked of him, he turned to WINK and mumbled, "yellow gum."
Sunday, January 30, 2011
Sometimes the good guys do win...
Pull out that trombone and assemble the parade because WINK came in 2nd at his cub scout pinewood derby today! He's actually going to compete at the district derby next month. If you don't know what the pinewood derby is- because I sure didn't until last year- it's a car race. Scouts and their dads carve the cars out of wood, paint, and assemble (wheels, weights). It's a riot to see how creative some of the cars are. But WINK's Swiss cheese car (yes...carved to look like a wedge of cheese) was one of the few that was obviously worked on by a father/son team, with hand tools instead of power tools, at the kitchen table.
None of us expected him to do so well. That sounds bad, but I mean that we never talked about the competition aspect of the race. But each time WINK's car pulled ahead of the other cars in the qualifying races (three cars race at a time, each car races six times, twice on each of three ramps), DAD and I just stared at each other, open mouthed, from across the room. I don't know how DAD kept his tone neutral as he MC'd the evening. WINK showed little reaction when he won the first and second time. But by the third, fourth, FIFTH, he was jumping up and flexing his spaghetti arms in a weight lifter pose, his little wrists and hands turned awkwardly in toward his head. My little champion.
After a short snack break, the top ten racers were announced. WINK was third. After they raced, the winners were announced in reverse order. SMILE and I were sitting, truly, on the edges of our seats. I managed to stay composed but six year olds know nothing of diplomacy.SECOND PLACE!! DAD and WINK ran over and we all became six year olds. And that's a very good thing.
None of us expected him to do so well. That sounds bad, but I mean that we never talked about the competition aspect of the race. But each time WINK's car pulled ahead of the other cars in the qualifying races (three cars race at a time, each car races six times, twice on each of three ramps), DAD and I just stared at each other, open mouthed, from across the room. I don't know how DAD kept his tone neutral as he MC'd the evening. WINK showed little reaction when he won the first and second time. But by the third, fourth, FIFTH, he was jumping up and flexing his spaghetti arms in a weight lifter pose, his little wrists and hands turned awkwardly in toward his head. My little champion.
After a short snack break, the top ten racers were announced. WINK was third. After they raced, the winners were announced in reverse order. SMILE and I were sitting, truly, on the edges of our seats. I managed to stay composed but six year olds know nothing of diplomacy.SECOND PLACE!! DAD and WINK ran over and we all became six year olds. And that's a very good thing.
Monday, January 24, 2011
My funny boy
Sure, "sweet," "smart," and "silly" are all words to describe my WINK , but I think the first word people would use to describe him is "quiet." Teachers have actually hi-fived me some of the few times he's misbehaved in class. He's THAT quiet.
But he had a huge breakthrough this weekend. WINK's social skills teacher (in a weekend class he attends at a facility for children on the spectrum) walked up to DAD and us this weekend with a huge, satisfied smile on his face. He said his moment of triumph was when all the boys in the class gathered around a hockey game. The other boys were being very loud and rowdy so Rob, the facilitator, said he was on his way over there to ask them to be quiet (he specifically had WINK's shy nature in mind). But right as he was about to start in on his request for order, WINK let out a rebel yell, fist pump included, and bellowed, "COME ON GUYS! WE HAVE TO DO THIS!"
Huh. There you have it! For the rest of the weekend, WINK did some typical kid and some atypical things. He watched THE KARATE KID remake and loved it (although he still prefers THE SORCERER'S APPRENTICE). He went bowling with DAD and SMILE. But he also had a breakdown over pizza and his ratty but much-loved stuffed animal. Oh well.
But my favorite moment was several hours ago. SMILE is, unfortunately, sick with a stomach bug. I hate to see him sick but I do think it's endearing when he ramps up his need for cuddles. It wasn't me who provided the extra attention this time, though. I didn't get the chance because WINK positioned himself at SMILE's side and calmly tickled his back during story time.
Huh...again. I met a grandfather this weekend who was sitting in the waiting room with the other parents whose children are in WINK's social skills group. He chatted openly with the group and his love for his grandchildren radiated out of him. "I'll tell you," he beamed, "these kids {children with autism spectrum disorders} are amazing if you know what to look for."
It's sometimes easy to forget...but he's absolutely right.
But he had a huge breakthrough this weekend. WINK's social skills teacher (in a weekend class he attends at a facility for children on the spectrum) walked up to DAD and us this weekend with a huge, satisfied smile on his face. He said his moment of triumph was when all the boys in the class gathered around a hockey game. The other boys were being very loud and rowdy so Rob, the facilitator, said he was on his way over there to ask them to be quiet (he specifically had WINK's shy nature in mind). But right as he was about to start in on his request for order, WINK let out a rebel yell, fist pump included, and bellowed, "COME ON GUYS! WE HAVE TO DO THIS!"
Huh. There you have it! For the rest of the weekend, WINK did some typical kid and some atypical things. He watched THE KARATE KID remake and loved it (although he still prefers THE SORCERER'S APPRENTICE). He went bowling with DAD and SMILE. But he also had a breakdown over pizza and his ratty but much-loved stuffed animal. Oh well.
But my favorite moment was several hours ago. SMILE is, unfortunately, sick with a stomach bug. I hate to see him sick but I do think it's endearing when he ramps up his need for cuddles. It wasn't me who provided the extra attention this time, though. I didn't get the chance because WINK positioned himself at SMILE's side and calmly tickled his back during story time.
Huh...again. I met a grandfather this weekend who was sitting in the waiting room with the other parents whose children are in WINK's social skills group. He chatted openly with the group and his love for his grandchildren radiated out of him. "I'll tell you," he beamed, "these kids {children with autism spectrum disorders} are amazing if you know what to look for."
It's sometimes easy to forget...but he's absolutely right.
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