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.
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