tag:blogger.com,1999:blog-80238758578317163362024-03-13T14:05:34.978-07:00Questioning AutismSusan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.comBlogger59125tag:blogger.com,1999:blog-8023875857831716336.post-6434336047457654342012-07-11T12:31:00.003-07:002012-07-11T12:35:05.805-07:00On Test Scores and Attempts at InterventionI received a letter from our school district's Executive Director of Instruction. Here's the opening paragraph.<br />
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"Your third grade student was given the Ohio Achievement Assessment for Reading last October and April. With both administrations your child's Reading score was below the 'proficient' level identified by the Ohio Department of Education for both test administrations. Therefore your student is being invited to participate in a week-long reading intervention class that will target your child's areas of most weakness and address those in a focused manner."<br />
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Hmmm. "With both administrations...for both test administrations"? Redundant redundancy. <br />
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My child's "areas of most weakness"? Most awkward.<br />
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"[A]ddress those in a focused manner"? Oh, good. I would hate for them to waste his time in an unfocused manner.<br />
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Methinks Madam Executive Director could use a little English 101 tutoring.<br />
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While I feel a tad mean-spirited calling her out for "below the 'proficient' level" composition skills, I'm not sure how I feel about Jack's being invited to participate in reading intervention.<br />
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Not sure at all.<br />
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Here's why.<br />
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1. Jack's OAA reading scores are essentially meaningless. Children with autism often score well below their ability simply because tests are boring and pointless, and the OAA focuses on an extremely artificial curriculum mandated by bureaucrats in the state of Ohio. The reading scores, in particular, are far below Jack's actual ability. <br />
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Allow me to give an example. Jack scored low in vocabulary acquisition. Third graders in our district do word-of-the-day worksheets and are tested once a week on this vocabulary. The first month of school, I helped him study for these tests, but I very quickly realized this was an utter waste of our time. The artificiality of the vocabulary meant little to Jack, and he couldn't retain the few words he got right on the tests even a week later. For instance, the word <em>drought</em> didn't stick. We did a worksheet together and I asked Jack to use it in a sentence, but he replied, "Uh. Mommy. Maybe later. I'm bored." I made him do it, but he still missed it on the test.<br />
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Jack actually does a lovely job acquiring new vocabulary in more natural ways.Yesterday, we were outside, and I pointed out the cracks in the dirt and crackling dryness of our grass. I told him we were in a drought, and that meant we weren't getting enough rain to keep the grass alive. He replied, "Wow. The drought makes all the plants thirsty and dries up the mud in the river." He used the word so easily and with the delight of a child learning something powerful and new. I'll make a point of repeating the word a few times this week and invite him to use it. Then he'll have it down. <br />
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Worksheets only teach--really teach--children who are enthusiastic pleasers. I loved worksheets in school. For that matter, I loved standardized tests. Jack, however, can't understand why a teacher or his mom would be pleased if he did well on a worksheet. Worksheets are, to him, boring. So are tests with bubble forms. What is the point?<br />
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If a child isn't doing his or her best work on a test, how meaningful are the test scores? <br />
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Not very.<br />
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2. Jack's scores in October and April were low (as they have always been). I question whether one week, 12.5 hours, of instruction will have a significant impact on Jack's reading level--either as tested by the OAA or in real life. The letter states that the intervention will target Jack's "areas of most weakness," and such individualized intervention is certainly preferable to a one-size-fits-all program. Our district has some very talented reading specialists although I don't yet know who will be teaching this class. <br />
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But how will that targeted program carry over into the regular school year? Will his special education teacher get a report of Jack's ability and disability as assessed by the reading specialist? Will his teacher then act on that report in meaningful ways? Will these meaningful ways focus solely on raising test scores or will they encourage and foster life-time reading? <br />
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You might guess which sort of focus I would prefer.<br />
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3. Jack likes to read books of his own choosing. He happily spends hours reading his books, most of which are below his actual reading level for school. <em>But he enjoys them</em>.<em> He begs me to buy them. He saves his allowance to buy them himself. </em>He is also able to read signs, menus (even when he won't eat off of them), road signs, and packaging labels. He remembers reading things several years ago...things most people would forget. He activates closed captioning on movies he watches and studies the words. <br />
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Sadly, there are no 4th-grade chapter books on Thomas the Tank Engine, although we do have A.A. Milne's <em>Winnie the Pooh</em> books on schedule for reading this summer. As Jack's interests mature, so will his reading. I am not worried at all about the long-term prospects for Jack's reading ability. <br />
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With nurturing and encouragement and natural development, he'll read just fine, with or without 12.5 hours of intervention.<br />
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4. Jack's math scores on the OAA were even lower than his reading scores. A jump-start to his math learning for fourth grade would be helpful because, unlike the reading scores, his math scores actually do reflect a serious disability. Why is there no math intervention program?<br />
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Of course, I enrolled Jack in the reading intervention class. If the reading specialist is good, the 12.5 hours of additional instruction certainly can't hurt him and may help jump-start his school year in a very positive way. He is happy in the school building and enjoys the school routine. <br />
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But I will ask lots of questions. And I will be in the school building every week this coming year. Last year, I didn't volunteer much and felt out of the loop. In April, I realized that Jack's reading wasn't progressing as much as I hoped largely because his teachers focused too much on oral fluency. They also weren't pushing him as hard as they could have.<br />
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Perhaps my being in the building wouldn't have changed what the teachers did last year, but it would have given me a chance to advocate sooner on his behalf. I'll be there this year. <br />
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Because one way or another, Jack will be a life-time reader. Of that, I am certain.Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com10tag:blogger.com,1999:blog-8023875857831716336.post-8304406309881707702012-02-04T05:20:00.000-08:002012-02-04T05:20:52.012-08:00Performance MiracleI hope you can read this. Click on the picture to bring up a larger version. <br />
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<a href="http://3.bp.blogspot.com/-sgf7KElINSs/Ty0vf-xMGtI/AAAAAAAAE_I/OPT65H1LCfY/s1600/Austistic%2Bboy%2Bat%2Ba%2Bperformance.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://3.bp.blogspot.com/-sgf7KElINSs/Ty0vf-xMGtI/AAAAAAAAE_I/OPT65H1LCfY/s400/Austistic%2Bboy%2Bat%2Ba%2Bperformance.jpg" width="400" /></a></div>
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Found this posted on FB and have not been able to verify it, but how completely cool that a performance might elicit this sort of response from a locked-in child? If this is true, I'll bet his parents are wigging out trying to leverage this into some sort of therapy!<br />
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<br />Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com4tag:blogger.com,1999:blog-8023875857831716336.post-68231404526121732912011-10-15T05:37:00.000-07:002011-10-15T05:37:16.008-07:00The PlungeToday, I gave Jack his first dose of Ritalin. We're going to watch him carefully to see if the dose is right, if any unwanted side effects, if his personality changes. I so pray that this works mainly to help him at school but also to feel more engaged with the world rather than just focused on his stimming. <br />
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Yesterday was unbelievably stressful. Our appointment with the developmental pediatrician was just 30 minutes (they are usually 1.5-2 hours), and it was presented upon scheduling as a "meet and greet" so the new doctor could get to know his patients. Instead, when Dr. S walked in, he introduced himself to Jack, had Jack introduce me to him, and then said, "Today's visit is mainly to discover if there are any urgent issues you need addressed right now because it's been so long since Jack had access to a pediatrician."<br />
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Why, yes. We do have an urgent issue.<br />
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I was so relieved that Dr. Z, Jack's previous doctor, had left detailed notes for Dr. S about Jack's attention issues, which have actually grown much worse since school started in August. I asked all Jack's teachers, aides and school therapists to write summaries of what they see in Jack right now, plus I gave him a copy of Jack's Multi-Factor Evaluation (or whatever they call them these days!), and Dr. S appreciated the data. <br />
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He presented himself as an evidence-based doctor and gave me the evidence for attention medication. I already knew most of it because Dr. Z had already told me, but Dr. S's confirmation absolutely put my mind at ease. He also didn't blink when I refused the flu vaccine for Jack and explained that I'd promised Jack he wouldn't get a shot this visit. Jack is completely current on all other vaccines, but he's never had a flu shot. He's not in any of the high-risk categories (other than his age), so I feel fairly comfortable about this. Hopefully, we can get him the mist in a month or so, but I won't subject him to his terror of needles until absolutely necessary. <br />
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Although it was a brief visit, I was impressed by Dr. S. He seems to have been minted in the same mold as Dr. Z, which is comforting. We'll stay in touch with him via phone as we shake down the medication dose and schedule another appointment in about two months. <br />
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The plunge is scary, but I so pray that this works to help Jack. <br />
<br />Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com9tag:blogger.com,1999:blog-8023875857831716336.post-38346168259680978992011-08-20T05:31:00.000-07:002011-08-20T05:38:32.141-07:00Letting Kids Be Who They AreParents of children on the autism spectrum have so many things to deal with that parents of typical children don't really think about, so I generally don't judge them when their decisions don't make sense to me. Just because a particular treatment doesn't seem sensible to me does NOT mean it isn't perfectly sensible to someone else. I applaud parents for taking steps...any steps...to help their children, and as no one really knows diddly sh*t about this disorder, who knows what steps might be the right ones? I sure don't.<br />
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This year, however, I found myself confronted with a negative judgment on another mommy, one I just can't get over. Nick asked why we couldn't invite one of Jack's friends, let's call him Bill, who had come for a playdate over the winter. Bill's mom had stayed for the playdate because Bill is more severely autistic than Jack, and she and I both wanted her to be here. <br />
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When Nick proposed a second playdate, I balked. He asked why. I said, out of nowhere I care to examine too closely, that Bill's mom wasn't nice and I didn't want to have to entertain her. <br />
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Not <em>nice</em>? She was perfectly pleasant and chatty. Whatever made me think she wasn't <em>nice</em>?<br />
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Then, it came to me. When Jack asked Bill to play with Thomas the Tank Engine toys, Bill said no and ran off to force his company on Nick and Nick's friend. Bill's mom said, somewhat condescendingly, that she decided Bill's obsession with Thomas was too immature, so when he was in first grade, she took all his Thomas toys to GoodWill and refused to let him play with or talk about Thomas so he could develop more age-appropriate interests. <br />
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When I shared this with Nick, he said, "Why would she do something so <em>mean</em>?"<br />
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Totally.<br />
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Part of me can understand this mother's desire to make her child more like his peers. But <em>he will never be like his peers</em>. And she knows this. She told me that Bill would never spend much time in inclusion settings at school because his behaviors were too disruptive and she really didn't expect him to ever move to inclusion. He would always be in the autism or LD classrooms, and she accepted this.<br />
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So why take away his Thomas toys? Perhaps she was sick of them, sick of listening to "Thomas the Tank Engine, Rolling along, Doo Doo Doo Doo...", sick of peeping and sound effects and such. In that, she would have my complete, heartfelt sympathy. But the fact was that Bill wouldn't play with Jack, who wanted to play with him, because Bill was too busy trying to include himself in Nick and his friend's play. Bill wanted to do what the big boys were doing, but the big boys didn't appreciate his pushiness even though they did try to include him. At least for now, Bill doesn't fit in with either group.<br />
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Jack's interests are not exactly age appropriate, but then, I'm positive I don't want him playing Call of Duty Black Ops (Rated M for Mature Audiences), like some 8-year-olds do. Kids grow up too fast these days, and while I want Jack to have friends his age and interact as well as he can, I can't imagine taking the joy out of his life by denying his pursuit of things he loves. <br />
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A few weeks ago, I took Jack to see <em>Winnie the Pooh</em>. He didn't want to go with George, Nick, and me to see the last Harry Potter movie, so we had a babysitter come for that. Jack loved <em>Winnie the Pooh</em>. He laughed and cheered and bounced in his seat. He had a smile on his face the whole time. If fact, it's the happiest I've ever seen him in a movie theater. I will take him to ride Thomas the Tank Engine in September when the really useful engine rolls into Lebanon. He looks forward to it all year, and not to take him seems the height of meanness.<br />
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His 9th birthday is coming up. Once again, all he wants is Thomas stuff. He wants me to decorate his room "like Thomas," because he saw a clip on one of his Thomas videos about a kid's room being decorated with Thomas stuff. That room was, of course, a toddler's room. I have ideas for making the room look less like a cluttered toddler's room and at least a bit more mature. (No Thomas wallpaper border or bed shaped like Thomas, for example!) He's never showed the least interest in what his bedroom looked like. I think this is progress. <br />
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What do you think about children on the spectrum having juvenile interests? How hard should parents push to encourage more mature interests? Has anyone had success in encouraging those more mature interests? If so, what did you do? What, in fact, are age-appropriate interests for 9-year-olds other than sports, which our children seem to feel are forced labor camps rather than fun?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com16tag:blogger.com,1999:blog-8023875857831716336.post-9421448599331666602011-07-25T06:17:00.000-07:002011-07-25T06:17:51.667-07:00Thinking about Parental Stress and AutismI have read in several places (and heard one NPR piece) about how parents of children on the spectrum report higher stress levels than parents of children with other disabilities, such as Down syndrome. The most likely causes of this are related to the nature of autism itself. First and foremost to my way of thinking, many children with autism are unable to show affection in ways that are satisfying to parents (hugs, kisses, saying "I love you," expressing appreciation for what the parents do, etc.). Lacking the ameliorating effects of this positive social feedback for their job as parents, they are much more likely to feel stress.<br />
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Frankly, I'm surprised actual research money needed to be spent figuring this one out.<br />
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In the past, I posted on <em>Questioning my Intelligence</em> that I don't feel excessively stressed by Jack's diagnosis, and part of the reason for that may be lessons learned during my struggle with depression. For me, Jack's diagnosis meant a lot of driving around and sitting in waiting rooms, and coordinating care with therapists and doctors and teachers. But at no point in this journey have I asked God, "Why Jack? Why me? Why our family?" When I read about people's stress on getting the diagnosis and as they continue to care for their child, I absolutely understand the rage, the fear, the self-pity, and the self-loathing. <br />
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I understand because I felt all those things twenty-five years ago when struggling with depression. Other than the fear, however, none of those feelings have touched me in relation to Jack's diagnosis. The fear is there every day: fear that we're not doing enough, not doing the right things, missing something that might help. There's also the fear of what challenges Jack will face and how cruel the world might be to him as he grows up. <br />
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But more fundamental to my ability to cope with the stress of having a child with autism is the level of feedback I get from Jack. He's high-functioning, affectionate, loving, deeply appreciative. He's verbal and says he loves me. That makes the hours of waiting in rehab, driving all over creation for appointments, worrying and fretting and thinking and stressing absolutely worth it and much easier to bear. <br />
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If he didn't have his demonstrative nature, if he couldn't talk or wouldn't hug, I wouldn't find any of this journey as easy as I have. A friend with an adult child on the spectrum was astonished when she witnessed Jack telling me he loved me and giving me a hug. Her son doesn't do that. It breaks my heart for her, but she seems to have made peace with it and appreciates her son for who he is. She glows when she talks about him, and that alone says a lot about her character. How I admire her strength and faith!<br />
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So here's my question for today. What do you do to cope with the stress? What is your perception of your stress level and to what do you attribute it? <br />
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This is a huge topic, with far too many variations for a single blog post...or perhaps a whole book. I'm just scratching the surface here, but feel free in your comments to bring up whatever strikes you most about the topic of parental stress and autism. I'll be posting in the future about those sub-topics that I've noticed myself (such as the stress caused by parents who act like you don't love your child if you don't put him/her on the GFCF diet or in ABA), but it would be great to have more suggestions!Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com6tag:blogger.com,1999:blog-8023875857831716336.post-50335599253619622592011-04-23T07:30:00.000-07:002011-04-23T07:30:28.517-07:00Military MedicineJack has been blessed for the past five years with Dr. Zernzach, a developmental pediatrician at Wright-Pat Air Force Base Hospital. Dr. Z diagnosed Jack and has met with him every six months since. He's answered countless questions, worked the system to get Jack the services he needs, and encouraged and cheered Jack on as he has made progress. When we were at the hospital seeing to Jack's foot injury, we saw Dr. Z across the atrium, and Jack said, "Dr. Zernzach is my favorite doctor."<br />
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So, of course, the Air Force is transferring Jack's favorite doctor to a base in Texas, to an administrative job in which he will not see patients. <br />
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No one, including Dr. Z, is happy about this. But that's the military for you: take someone who has amazing gift in one job and give him a different job that he doesn't want in a place he doesn't want to live. Yep. That's an awesome way to use taxpayer dollars to build morale and quality medical care.<br />
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Cynicism is smoke rising from the ashes of burned-out dreams.<br />
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Of course, I'm melodramatic in my disappointment. I know that Dr. Z will do a great job in whatever position he finds himself. I know that he will continue to advocate for quality patient services because he's a doctor and an officer and a gentleman of integrity. And in a few years, he can retire to private practice and do what he loves: see patients. I wish him all the best and send with him my undying gratitude for all he has done for Jack and for us.<br />
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We could transfer Jack's care off base to Dayton Children's, but the wait to see a developmental pediatrician there is l-o-n-g. Jack will be seen by Dr. Z's replacement in September, as per his regular schedule. But this also means that we cannot start Jack on attention medication until October (his teachers do not want him starting them at the beginning of the school year as their experience with that has not been good). <br />
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This delay frustrates me and George, mainly because it took us so long to work up the courage and conviction necessary to give meds a try and now we have to wait. At least we have health care; at least we have access to a major medical center that staffs developmental pediatricians; at least we'll get there eventually with the meds. Trying to look on the bright side, here. But it's hard. <br />
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After all, this is our son we're talking about.Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com4tag:blogger.com,1999:blog-8023875857831716336.post-60909094778785955012011-04-11T06:41:00.000-07:002011-04-11T06:41:39.596-07:00On Report Cards, IEP Progress Reports, and Standardized TestingThe boys' third-quarter term ended, and the school sent out report cards and IEP progress reports. We also recently received their results from the Iowa standardized testing conducted in our district. <br />
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It's a good thing I'm somewhat comfortable with ambiguity.<br />
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Jack's report card was surprisingly good, but second-grade report cards do not feel like data to me. For instance, Jack received an A in social studies, yet I decided early in the year that we would not do social studies homework. The second-grade vocabulary list included <em>executive</em>, <em>judicial</em>, and <em>legislative; </em>I'm not wasting my time or Jack's to study these abstract terms. I learned about government in 7th grade. It was easy to learn at that time because my brain had developed the ability of abstract thought. Neurotypical 2nd graders in Jack's class learned the words but, when questioned about their meaning, did not understand what they had learned. <br />
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Is this education?<br />
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Well, it passes for education in Ohio because it's part of the curriculum mandated by the state. But the reality for Jack is that he is more than a grade level behind in math, and while his reading skills are good, his reading comprehension is hampered by short attention span and impaired ability to communicate understanding of what he reads. Consequently, we focus on math and reading homework. <br />
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I saw the enormous effort Jack put into reading and understanding a lovely story about Hellen Keller, but because the story doesn't repeat the fact of Keller's blindness and deafness, Jack didn't understand that she could not see or hear...even after reading the story numerous times at home and at school. How, then, could he understand the three branches of government? He hears <em>branch</em> and thinks <em>tree</em>.<br />
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Last night while we played snuggle-bunnies before bed, George spoke for Jack's stuffed Stitch doll. Jack said, "Stitch doesn't talk, Daddy. He's a stuffed animal." Then, George joked, "What!?! I didn't get a talking alien? The Disney store ripped me off. That was money down the drain!" Jack said, "Don't do that to Stitch!" He thought George was going to flush Stitch down the drain. We tried to explain what George had meant, but I don't think Jack really got it because he kept a death-grip on Stitch until George left the room.<br />
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Jack earned a B in science. This actually seems more reasonable to me. He loves certain things about nature, so he's willing and able to learn. For instance, he was fascinated with the phases of the moon...because he can see it in the sky, see how it changes each night. It's a real, concrete thing. <br />
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Jack's grades are the result of a modified curriculum to accommodate his needs and must be affected/inflated by the aides he works with. When he was given the Iowa Achievement test, he had no accommodations other than a teacher at his side to keep him focused. She couldn't help in any other way. The scores, needless to say, were very low. <br />
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This standardized data isn't useful either because Jack's academic skills are nowhere near as low as the standardized test would indicate. These low scores merely tell us how poor Jack's attention span is and how hard it is to motivate him to do things he does not want to do.<br />
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In the broader picture, these failed attempts to quantify Jack's academic achievement symbolize the failed attempts of neuroscience to describe exactly what causes autism or what therapies can help any given child. The experts can't even come up with diagnostic criteria that make sense, despite their dedicated attempt in DSM-V.<br />
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We parents in the world of autism are essentially forced into a world full of ambiguity, irrelevant data, uncertain courses of action. We make decisions to act, wonder if these decisions are right, fret over uncertain evaluations of our decisions, and try hard not to scream with frustration.<br />
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I crave data. When I get it, however, it tells me little. And I move on.<br />
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There's really no other choice. <br />
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<em>How do you feel about your child's grades and test scores? Do you feel they accurately reflect his/her ability?</em>Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com6tag:blogger.com,1999:blog-8023875857831716336.post-13433133512408836272011-03-17T18:39:00.000-07:002011-03-17T18:39:59.828-07:00Yes, I'm Still HereThere has been a lot going on lately (mostly quite good), and I need to process and share. Writing about it will help me process, so hopefully you'll see more posts in the near future. <br />
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In the meantime, I have two things for you: a link and a question.<br />
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<strong>The Link:</strong> I had a blog reader share a wonderful link with me. I'd not heard of <a href="http://www.rosesforautism.com/index.cfm?itemCategory=37701&siteid=389&priorId=0&banner=a">Roses for Autism</a>, but what a wonderful organization doing good work.<br />
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<strong>The Question:</strong> Have you put your child with autism on attention medication? If so, how did it go? We're going to talk medication with Jack's doctor soon, and I'd really appreciate any information you can share!Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com3tag:blogger.com,1999:blog-8023875857831716336.post-68136214671171993082011-01-07T09:19:00.000-08:002011-01-07T15:54:39.663-08:00"I Know What You're Saying..."Actual conversation:<br />
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<b>Jack:</b> Will you play hide and seek with me Dad?<br />
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George:</b> Sure, pal.<br />
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<strong>Jack:</strong> OK. I will hide under the bed and you will find me!!<br />
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Several iterations of hide and seek later, with Jack hiding under the bed every time and shouting with incredulity, “You found me!!” when George walked into the room...<br />
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<strong>George:</strong> Jack, you really should hide someplace else; I know where you are hiding every time.<br />
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<strong>Jack:</strong> I know what you’re saying, Dad, but I just love hiding under the bed.Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com4tag:blogger.com,1999:blog-8023875857831716336.post-9087247813581414142010-12-01T17:04:00.000-08:002010-12-01T17:04:34.879-08:00A Story from SchoolHere's the note Jack's teacher sent home today:<br />
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"Yesterday, Jack's friend got into trouble and was sent to time out. While there, he said, 'I'm a loser!' This <u>really</u> concerned Jack. He went over, sat next to his friend, and told him, 'It's okay; you're not a loser.' He was so sympathetic toward his friend! Then, he told his friend, 'You just have to believe!' Then he started talking about Santa. Too funny! He definitely talked his friend out of his funk! What a great helper!"<br />
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How sweet is this!<br />
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He's been riding the regular bus with no problems, so we're modifying his IEP. I'm still nervous about the bus, but alas, mommies should not be too overprotective. At least, that's what I keep telling myself.Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com3tag:blogger.com,1999:blog-8023875857831716336.post-66850681678831197162010-10-20T09:22:00.000-07:002010-10-20T09:22:48.724-07:00The BusRiding the bus. I always thought riding the bus to school was fun. I missed it when, in seventh grade, I transferred to a private school that didn't have bussing. Who would have thought I'd be so concerned about my own boys riding the bus? Not me. <br />
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Yet Nick had issues on the bus, particularly in second grade. He was bullied and picked on, and he is, shall we say, <em>reactionary</em>. He couldn't ignore what was happening...the quickest way to end most bullying of the type he experienced. Because he always reacted (just like the bullies wanted!), the bullies kept at him. <br />
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That whole issue eventually got resolved after I talked to parents and the principal intervened, and now Nick is a big kid on the bus, which carries first through fifth graders. He handles the commute quite well, and it never occurred to me that he wouldn't get it all straightened out (with a little help). But when it came to putting Jack on that same bus, I balked. Big time.<br />
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Nick isn't autistic. Jack is. He's different. He's also sweet and sunny and friendly and concerned about little kids. I didn't want him getting picked on even though I really don't think he would notice or recognize sarcasm. Meanness he would recognize. And I wanted to protect him from that. <br />
<br />
Our school has transported him on the "special" bus, which has an aide on board to help with the children. I liked that another adult was present to keep an eye on things while the driver kept her eyes on the road. It felt safer to me. <br />
<br />
But. But. But.<br />
<br />
The reality is that Jack is very high functioning. VERY high functioning. Compared to last April, when I made the decision to keep him on the little bus, he's not even the same kid. His autism specialist is pulling his one-on-one aide from music and gym because he doesn't need aides in those classes anymore. Last year, he could barely stand 20 minutes in the regular classroom, and this year he spends the bulk of his day there. His verbal communication skills have exploded (though receptive language is still a struggle for him). He really doesn't need the little bus anymore. <br />
<br />
So we're moving him to Nick's bus. God, I get a pit in my stomach just typing that. <br />
<br />
I've never thought of myself as a hovering parent. I never stood right under my kids on the playground as they tried new things. I stood back, let them get into trouble. I let them learn to get themselves out of trouble, too. But we all have lines we draw in the sand, issues that we just can't be rational or logical about. Here's my issue: the bus.<br />
<br />
I'm stepping back, letting Jack into that environment that can be so negative. Just like Nick, with a little help, he can handle it. It will all turn out okay.<br />
<br />
I'm scared, but I'm doing it. No doubt, it will be harder on me than on him. I read a lot about parents of kids on the spectrum holding back progress because they are over-protective. I don't want to hold Jack back.<br />
<br />
Where are your lines in the sand? What are your issues that push you to a protectiveness you never thought you'd experience as a parent?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com1tag:blogger.com,1999:blog-8023875857831716336.post-21856584887852376032010-09-02T04:25:00.000-07:002010-09-02T10:46:52.224-07:00Growing Social AwarenessJack's first week of school was wonderful but, not surprisingly, he's showing some signs of stress. In the regular class, he has started asking for "quiet time" in the day, and they give him a two-minute break to read a book without having to pay attention to the teacher or interact in the class.<br /><br />Have I mentioned lately how much I love this school district? Well, I do!<br /><br />Tuesday, Jack had to go to speech therapy at Children's at 5:00. I gave him total down-time when he got off the bus, so he watched a movie and stimmed for almost an hour before we left for therapy. I kept him focused on the drive there in an attempt to get him back out of his private world. When he came out from his session with Ms. Debbie, she told me he had a horrible time focusing. He asked her not to tell me that he'd not done a good job, though both Debbie and I totally understand why he would have this problem at 5:00 PM on the seventh day of a new and challenging school year.<br /><br />When Jack and I got in the car, he said, "Mommy, my brain wasn't working right today. Are you disappointed in me?" This BROKE MY HEART!!!! I explained that we all have bad days when our brains don't work very well, and that it's okay as long as he did his best. "Well, I did my best, but it wasn't very good," he said. Then he asked, "Was Ms. Debbie disappointed in me?"<br /><br />As heartbreaking as this is, it's also a very good sign of growing social awareness. Jack is finally realizing that his actions affect other people...or at least finally able to verbalize his awareness. That is HUGE for a child with autism. In reading books and blogs by adults living with autism, I've been struck by how hard it is for them to understand why anyone else would care what they do or say. They don't want to hurt anyone and are hurt and confused when they realize they have. <br /><br />That Jack's brain is capable of this sort of awareness at 8 years old gives me hope that he'll be able to have more appropriate empathy and social awareness as he matures. It also gives me hope that motivating him to do his work will get easier as he seeks to please the grown-ups in a more typical way. We shall see how far he can go, but for now, I'm all about teaching him that his best is quite good enough for me...no matter what it is.<br /><br />What signs of social awareness have you seen in your child with autism? How did you feel about those changes or the lack thereof?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com2tag:blogger.com,1999:blog-8023875857831716336.post-89096389953126903342010-08-26T04:04:00.000-07:002010-08-26T04:32:00.260-07:00Back to School and the Big PictureWow, this summer was a blur. Now that school is back in session, I feel like things can finally get back to normal, whatever normal is!<br /><br />There's a part of the Individualized Education Program (IEP) form that asks what general educational goals parents have for their children. The first few IEP meetings I attended, the question stumped me. It's a <strong><span style="font-size:130%;">BIG PICTURE</span></strong> question, and most of my thoughts going into an IEP are<strong> <span style="font-size:78%;">little picture</span></strong> details. By now, however, I've been to so many IEP meetings, I know it's coming and plan an answer accordingly.<br /><br />It's a good question because we mommies and daddies of children on the spectrum are often focused on the <strong><span style="font-size:78%;">little picture</span></strong>. We deal with the daily tantrums, fights to get our kids to eat healthy food, stimming (OHMYGOD the stimming!), homework, therapy, routines and breaks in routine, the struggle to bring our children out of their own private world and into the public world of social interaction.<br /><br />Back-to-school time is as good as an IEP meeting for reviewing the <strong><span style="font-size:130%;">BIG PICTURE</span></strong> of education. For Jack, this means he's spending far more time in a regular classroom with a full-time aide and far less time in his TEACCH classroom. One of our long-term general educational goals for Jack is for him eventually to be mainstreamed in regular classes without an aide. This may or may not be reasonable for Jack, but we're aiming high and hoping he gets there. As far as the autism spectrum goes, Jack is very high functioning, but just how funtioning he'll be in the future is, of course, a mystery.<br /><br />We're a LONG way from that level of independence, but second grade marks at least an attempt to move further down that road. I'm jubilant and terrified at the same time. In the very early days after Jack was diagnosed, I didn't even want to think about the big picture of the future. It seemed too uncertain and scary and totally out of my control. Now, I've accepted that <em>it is most definitely out of my control</em>, which perversely makes it much easier for me to move forward and make decisions and take action with hope that it will all turn out okay in the end.<br /><br />What are your <strong><span style="font-size:130%;">BIG PICTURE</span></strong> educational goals for your child with autism? Do you aim high and hope for the best or keep focused more on short-term progress because, frankly, the big picture is just too scary to contemplate? How is your back-to-school experience going this year?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com1tag:blogger.com,1999:blog-8023875857831716336.post-88459019329876163742010-07-31T05:05:00.000-07:002010-07-31T05:17:41.421-07:00#39 New FoodMost nights, Jack eats an Oscar Meyer cheese dog and kraft mac and cheese. Last night, I accidentally grabbed a box of shells and cheese instead of mac and cheese and made it for Jack's dinner. I tried to get him to eat just a bite of the differently shaped pasta...and he would not. So I told him he would not get to watch a movie the next day until he had taken a bite of the shells and cheese. <br /><br />I'm the meanest mommy EVER.<br /><br />He refused the shells last night, woke up this morning, and wanted to watch a movie. I said he couldn't until he ate a bite of the shells and cheese. Much screaming and whining ensued, until finally the desire to watch a movie overcame the fear of TASTING SOMETHING NEW!<br /><br />He counted down to the bite, took it, and gagged. He chewed, swallowed, gagged again, and asked for a juice box. After washing the taste out of his mouth, he said, "It looks like it was going to throw me up."<br /><br />But he did it. By golly, he did it!<br /><br />What do you do to encourage your child on the spectrum to broaden his/her taste horizons?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com5tag:blogger.com,1999:blog-8023875857831716336.post-72744548912365586102010-07-19T14:49:00.000-07:002010-07-19T15:00:37.077-07:00#38 InsightOne thing George and I constantly wonder is this: how much does Jack actually understand about the world? Sometimes, he seems so disengaged and/or clueless, and other times, he shows remarkable understanding.<br /><br />When we were saying goodbye to our golden retriever, just before George took him to the vet to be euthanized, Jack and I stood at the back of the car, petting Hoover for the last time. Jack couldn't understand why we were all so sad. "I'm <em>not</em> going to be sad!" he said.<br /><br />Then, he told me, "Mommy, when Daddy said Hoover was sick and was going to die, I got my wand and pointed it at Hoover and said, 'Brakiarm emendo!' [a spell from Harry Potter]. I did it over and over again. But it didn't work." He paused, then added, "I want a wand that works."<br /><br />So do I, Jack.<br /><br />When I reminded him that wands are make-believe, he said, "I know." But does he?<br /><br />Things like this make me realize I too often underestimate how much Jack understands. Today's question, then, is this: <strong>How do you balance your own perception of your child's/student's/patient's understanding to keep from selling them short or giving them too much credit?</strong><br /><br />Not sure how you can answer this, but it seems to me it's an ongoing process. I'm curious to know how other parents/teachers/therapists/doctors feel about it.Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com1tag:blogger.com,1999:blog-8023875857831716336.post-41465623471916511722010-06-11T05:37:00.000-07:002010-06-11T05:51:23.247-07:00#37 A Fun QuestionLet's face it, a lot of life related to autism stinks, but a lot of it is really funny, too. I know one mother of an autistic boy who had to duct tape the peanut butter jar. On the one hand, this is sad and unbelievably frustrating, but on the other, it's absolutely hysterically funny. She chooses to look at it as hysterically funny and one more adventure in this strange journey autism takes us on.<br /><br />Jack brings an amazing amount of laughter to our lives every single day. His little one-liners slay us, as does his literal take on language. We're lucky that he's so verbal and communicative when so many people with autism are not able or even driven to communicate. Sometimes, Jack will express something oddly ("Hoover, you look cute in your face."). Sometimes, he does and says funny things to get his own way. Here's an exerpt from an email his teacher sent me recently:<br /><br />"I took [Jack] and the other students up with $1 to spend for business day. He ended up getting watermelon. On the way out he noticed a brownie with BLUE icing and really wanted it. He literally went up to the girl selling them and batting his eyes (I am NOT making this up!) said "You know blue is my favorite color and I LOVE brownies, but I have no money." Well....who can resist that, she gave him one for free. I told Jack that his charming personality will not always get him free things in life. Of course he had no idea what I was talking about! I'm going to miss him this summer!"<br /><br />Sometimes, it's his tone of voice, which I can't really convey in writing, that elicits our giggles.<br /><br />So today's question is this: What has your child with autism done lately to make you laugh?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com6tag:blogger.com,1999:blog-8023875857831716336.post-42141665960352893612010-05-12T09:11:00.000-07:002010-05-12T09:14:55.277-07:00#36 Plans for SummerAs we approach summer break in the northern hemisphere, I'm wondering what y'all are planning for your children's summer activities.<br /><br />Our plans for Jack are a bit up in the air. He'll continue gymnastics (it's keeping him out of PT) and his regular therapy, and he'll attend extended school year. His intervention specialist is sending home summer work for him, which will take a few minutes every day. Beyond that, I have nothing planned but am looking at VBS and Ranger Camp as short-term activities.<br /><br />So, what are your plans for summer for you children?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com7tag:blogger.com,1999:blog-8023875857831716336.post-64092503877433304922010-04-27T10:13:00.000-07:002010-04-27T10:16:01.750-07:00Jack and HooverPlease click over to my other blog--<a href="http://questioningmyintelligence.blogspot.com/2010/04/jack-and-hoover.html">Questioning my Intelligence</a>--for a little update on Jack and Hoover, our dog who is dying of cancer. <br /><br />Thanks to all of you who commented on the earlier question about autism and the death of a pet. Hoover is hanging in there, but he's definitely declining as the tumor grows.Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com0tag:blogger.com,1999:blog-8023875857831716336.post-6293113897376314912010-04-20T09:50:00.000-07:002010-04-20T10:07:04.345-07:00#35 DSM-5The proposed diagnostic criteria for <a href="http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#">Autism Spectrum Disorder</a> were posted online weeks ago. What do you think about the new criteria? Strenghths? Shortcomings? How does your own child measure up to the new criteria?<br /><br />My <em>initial</em> feelings are pretty positive, simply because it is so much less complicated than before. Jack would definitely qualify for an ASD diagnosis under these criteria, and I think more children who are higher functioning yet clearly disabled would qualify more easily. Eliminating the subcategory of PDD-NOS will (hopefully) help children on the milder end of the spectrum qualify for services and insurance when they have been excluded in the past. Currently, some parts of the country provide services to children diagnosed with Autism proper but not to children with a PDD-NOS diagnosis. Plus, providing more services to the higher-functioning kids will probably have a ripple effect of helping them be more funtional and independent as they grow up and pay off in the long run.<br /><br />But then, I'm always looking on the positive side and have deliberately waited until the media furor (there was one, I'm sure) over the proposed criteria died down. I plan on googling the issue in the next few days, and would love to hear your take on it first. What shortcomings do you see in the new criteria--especially as they relate to your child, students, or patients--that I'm not considering?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com1tag:blogger.com,1999:blog-8023875857831716336.post-48506877148619802542010-04-03T04:46:00.000-07:002010-04-03T07:30:38.623-07:00#34 MedicationAt Jack's developmental pediatric appointment last week, we opened discussion about medication for attention. Jack's therapists and teachers all agree that his short attention span and easy distractability are starting to get in the way of learning. No one is overly concerned yet, so we're starting the discussion now so neither George nor I freak out in the fall if it becomes a necessity. We've never liked the idea of medication, but then, there's a lot we've had to face that we didn't like in the last four years.<br /><br />So, today's question is this: what are your experiences with medication for attention in children with autism? Good, bad, ugly?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com5tag:blogger.com,1999:blog-8023875857831716336.post-64486053082792391922010-03-12T06:41:00.001-08:002010-03-12T06:45:42.218-08:00#33 Death of a PetWow, this is a hard one. Our dog, Hoover, has been diagnosed with cancer and has weeks or a few months to live. He's older than either of our children, so this is a big deal. We're telling the boys tonight and will write a bucket list with them of things to do with Hoover before he goes. Ice cream and bacon will factor on this list.<br /><br />Nick is very sensitive and I predict much drama from him (and me, actually). Jack, however, is a complete mystery to me. I have no idea what to expect from him. He's seen <em>Marley and Me</em> and seemed to understand it. Sort of.<br /><br />So today's question is this: how did your autistic child/student/patient react to the death of a pet? What did you do that seemed to help in this situation? What advice do you have?<br /><br />Thanks in advance!Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com6tag:blogger.com,1999:blog-8023875857831716336.post-67414220698779424642010-03-05T07:21:00.000-08:002010-03-05T07:25:44.072-08:00#32 BussingDoes your child with autism ride the special bus or the regular bus? What factors went into your decision?<br /><br />Jack has always ridden the special bus. With his IEP coming up, this issue needs to be addressed for next year. His big brother will be in 5th grade (the oldest grade on the regular bus) and may possibly be able to watch out for his little brother. Jack hasn't said a word about riding the same bus as his brother, but other kids in the neighborhood (we have LOTS of them) have asked why Jack rides a different bus. THey accept the answer readily, but I wonder. Should we take the plunge and put Jack on the regular bus for second grade?<br /><br />What are your thoughts? Thanks in advance for sharing!Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com4tag:blogger.com,1999:blog-8023875857831716336.post-80996770901353410622010-02-21T15:44:00.000-08:002010-02-22T17:31:25.948-08:00#31 IEPsWe just got a notice from our son's teacher that she's preparing for his IEP meeting and wants to know what goals (social, academic, speech, OT, PT) we want to set for second grade. Frankly, I'm always baffled by these request. I sort of know what I would like to see but the specifics are really not in my specialty.<br /><br />I'd like for him to be reading at grade level before the end of second grade (which is, I think, very realistic at this point and with this teacher), but beyond that, I'm not sure what sort of academic goals I would push. "At grade level" seems good to me, especially since this school district isn't slack in academics. I'd also want him spending more academic time in the typical classroom, as he becomes able to do so.<br /><br />As for social, I want him stimming less at school, and I'd like that to be a measurable goal. Not sure how, but perhaps the teacher will have a better idea. But that is becoming a big barrier between him and his peers. They just don't know what to do when Jack starts spouting movie lines randomly.<br /><br />OT, PT, and Speech are much more measurable. I want Jack's handwriting to be more controlled, his core strength to continue improving, and his receptive language and conversational reciprocity to improve. Also, I'd like the OT to work on sensory techniques to get Jack concentrating better in the typical classroom. She's had <em>amazing</em> success with my firstborn.<br />Then, there's the bus. Nick will be in fifth grade (the oldest grade on the bus), and I wonder if he would be enough of a supervisor for Jack to ride the regular bus. I am pretty sure one friend of mine thinks I'm being way too overprotective having Jack on the "special" bus as it is.<br /><br />Anyway, to today's question: How specific are you with requests like this? Do you get detailed with goals, or do you feel comfortable with your teachers, intervention specialists, and therapists taking care of the specifics? I feel a very high level of trust with the school, but if I didn't, I'd be a lot more concerned.Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com4tag:blogger.com,1999:blog-8023875857831716336.post-2487713974373698752010-02-09T05:03:00.000-08:002010-02-09T05:24:15.898-08:00#30 A Question of WordsMy other blog, <a href="http://questioningmyintelligence.blogspot.com/2010/02/one-kind-word.html">Questioning my Intelligence</a>, touches on the topic of autism today, and today's question stems from that essay.<br /><br />Has anyone shared kind words with you? Sometimes, it seems that parents of children with autism only get dirty looks and criticism from others, but I know that there are people in the world who share kind words and smiles, too. Today, let's share those stories...either of kind words you've given to others or kind words someone has given to you.<br /><br />One day about a year ago, a woman who works at our church preschool stopped me and shared a story. She had helped a friend by watching her children one morning. One of the children was autistic, and the experience helped her see just a bit of what parents of kids on the spectrum deal with day to day. Her friend had a hard time finding someone to watch her kids and really had appreciated the help.<br /><br />The preschool mom knew Jack wasn't as severely affected as this other child, but she told me that if I ever needed someone to watch him, even on the spur of the moment, to call her.<br /><br />I'd recently been dealing with the fact that a neighbor didn't want Jack in her house because he makes too much noise. At least, that's what she said. To have someone reach out to me with such a generous offer really helped assuage some of the annoyance and hurt I was feeling.<br /><br />What kind words have you heard or given? What effect did they have? What keeps you from speaking kind words when you can?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com4tag:blogger.com,1999:blog-8023875857831716336.post-18487517466666054142010-02-04T06:27:00.000-08:002010-02-04T07:29:36.131-08:00#29 Dealing with AmbiguityGiven the <em>Lancet's</em> recent retraction of Andrew Wakefield's article that started the whole MMR vaccines-cause-autism scare, I'm thinking again about how ambiguous the world of autism is. We don't have a good answer to a very important question: "What causes autism?" This sucks.<br /><br />And of course without that answer, we have a tough time treating autism effectively. A treatment (whether it's biomedical or behavioral doesn't matter) seems to help one child but not another. A whole <em>set</em> of treatments helps one child but not another. For every so-called "recovered" child out there, there are uncounted numbers of children whose parents did the same treatments without the same happy results This sucks.<br /><br />And of course without a clear protocol for treatment, two things happen. First, legitimate doctors and therapists promote treatments they genuinely believe might help. Their clinical work may turn up something useful...or not. That's clinical science. Second, snake-oil salesmen and unethical doctors who know their therapies don't work bleed families dry, drain retirement funds, and force some families into bankruptcy by selling false hope. This sucks, too.<br /><br />And the fighting that results on message boards and in print between the different sides of the autism debates feeds on all this ambiguity, fostering factionalism, chaos, judgment, and hatred. Honest to goodness <em>hatred</em>. If you're a fan of biomedical/detox interventions, how many times have you rolled your eyes at someone promoting ABA? If you're a fan of behavioral therapies, how many times have you rolled your eyes at someone who is detoxing their autistic child using a special diet or chelation therapy? Come on, you know you have done this. Because without facts and good science and hard numbers, autism becomes more than a pervasive developmental disorder; it becomse a philosophy, or maybe a religion. It's about faith, not fact. And faith is a powerful thing.<br /><br />There's a lot that sucks about all this. Unfortunately (like we need more <em>unfortunate</em> in this situation), we parents have to DO something to help our children. We have to make choices without good information, and we want to believe that the choices we make are <em>right</em>. There's too much at stake.<br /><br />Because George and I are both pretty mainstream in our medical thinking, we decided over three years ago to use more mainstream treatments: speech, physical, and occupational therapies, and our school district's TEACCH-based special education classes. We also took the child psychologist's advice and put Jack in activities and classes with typical kids. He goes to camp and VBS in the summer (with a helper to keep him focused). He has inclusion time every day at school. And he's making really good progress. All his teachers and therapists and his doctor are happy to see how far he's come. Since what we're doing seems to be working, we're quite logically sticking with it. But there's always that little voice that says, "What if we're missing something?"<br /><br />I really hate that little voice. <br /><br />I'm sure doctors and therapists and educators face the same dilemma in their own actions, and I appreciate them weighing in on this question as well.<br /><br />How do you make choices in this profoundly ambiguous situation? How certain are you when you do something that it will work? How do you decide if it's working or not? How do you know it's time to stop and move on to something else? In short, how do you deal with the ambiguity surrounding autism?Susan Raihalahttp://www.blogger.com/profile/03018860599601419989noreply@blogger.com4