tag:blogger.com,1999:blog-24038655984607280652024-02-02T12:52:08.205-05:00Rainmomjen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.comBlogger214125tag:blogger.com,1999:blog-2403865598460728065.post-47361315628973269672016-04-29T11:13:00.001-04:002016-04-29T11:13:36.322-04:00Step 4 - Become a positive presence around people with autism and their families<div class="separator" style="clear: both; text-align: center;">
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Step 4 is predicated on the first three steps. You learn some stuff about autism. You get familiar with someone on the spectrum. You get comfortable with someone on the spectrum. Once you do that, you'll be in a much better position to be a positive presence in the lives of people living with autism. Of course, your experience of steps two through four might be different depending on the person you're getting to know. Let me provide a few remarks about what step 4 might look like in the case of Martin and those of us who take care of him.<br />
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How to avoid being a negative presence:<br />
<br />
* Don't complain about your typically developing kid in front of us. I know you might feel heavy laden by a schedule filled with soccer practice and ballet lessons. I realize violin camp costs a fortune. And I'm sure the gifted and talented program at your child's school is inadequate. You should talk about those problems with someone else. My kid has never been able to be on a sports team. I have to pay an insane sum for my kid to go to camp and simply make smores. My kid gets poor grades and fails all standardized tests. Everyday I'm reminded of the parts of our world from which we are shut out. You need not pile on.<br />
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* Don't freak out, gawk, yell, eyeroll, or finger point at Martin or his family members when things are going poorly for him. You'd be surprised how many people feel compelled to offer physical signs of their disapproval of people with neurological conditions.<br />
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* Give us a break. We are so exhausted. Don't ask us to be on the PTA, extra church committees, non-profit boards, or anything else that non-exhausted people can do. Raising a child with significant autism is like an endless cycle of marathons. We are really tired most of the time. And you might be tired, too. But I don't have time to care about that.<br />
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* I could say more, but really, there is one simple rule here: think and think again before you open your mouth.<br />
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Being a positive presence:<br />
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* Show appreciation for an autistic person's individual gifts and talents. Voice your enthusiasm for the positive aspects of an autistic person's personality.<br />
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* Model this positivity with your children and other young people.<br />
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* Offer your material support. If you can offer respite, you are a godsend. And if not, you can do so many other things. Encourage family members to take care of themselves, help in that care, and offer words of encouragement. Feel free to bring over pizza and buy rounds of margaritas.<br />
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* Show the person with autism, their family, and other people that autism does not get in the way of your ability to feel and show love.<br />
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* Again, I could say more, but the same holds true. Think and think again about the ways you can be a supportive presence. Be creative. Be open. It's possible.jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com1tag:blogger.com,1999:blog-2403865598460728065.post-19027717180408476092016-04-25T09:00:00.002-04:002016-04-25T09:00:33.010-04:00How Prince Can Rock Everything, Including Autism Awareness Month<div class="separator" style="clear: both; text-align: center;">
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Like so many people, I was undone by the news that Prince died last week. I could write forever about the role his music played in my life. I could go on about musical brilliance. But this is an autism blog. So let's talk about Prince and autism.<br />
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Let me start by asking if (and how) Prince pushed your limits? You don't have to Tipper Gore to be a little bit scandalized by the lyrics of Darling Nikki, right? You could love Prince breathlessly and still wonder about some of his fashion choices. You could own every album and still pause when he changed his name to a symbol.<br />
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For many of his biggest fans, those moments of hesitancy lasted hardly longer than a heartbeat. We accepted his ode to a woman finding pleasure in a hotel lobby. We figured it was our job to learn to love the orange sequin pantsuit. We learned that the name change resulted from a struggle to protect artists' integrity. And that just made us love him more.<br />
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Because his of artistic brilliance, we followed him down every weird path: before-its-time gender bending, sartorial outrageousness, melodramatic movies, and purple everything. We accepted it all and, of course, we were the luckier because Prince gave us his music and led us to places we should have been willing to visit anyway.<br />
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He should not have had to be so brilliant to garner people's embrace of his fluid gender, bizarre lyrics, and crazy clothes. If we were better people, we would have accepted everything without him having to give us something in return.<br />
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But he did take us to places we hadn't expected. Once there, we realized it was no big deal if people moved back and forth between the poles of gender we had assumed to be fixed. We recognized that outrageous clothes don't harm us. If anything, they can delight. And we accepted that lesser songs are just part of the artistic process.<br />
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It was easy to love Prince because he gave so much more than he asked of us. It's harder, of course, to love the weird when the benefits are less tangible. And here I make the turn to autism. Sometimes, and often quite unconsciously, people want something from people with autism. They search for some kind of genius within them. They hope that the autistic person is also a savant, somehow making them cooler to know. But this is selfish. Having preternatural talent should not be the price of autism acceptance.<br />
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Prince was beyond weird. But he also had preternatural talent. And so we loved him wildly, every part of him. Hopefully, he taught us not to be so stingy in our willingness to love the people that push our limits. He showed us that it's a beautiful thing to love those who are strange. Perhaps it's time to start giving and loving a lot more and forego our expectation of an equal return. <br />
jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com1tag:blogger.com,1999:blog-2403865598460728065.post-78902991217110943252016-04-20T09:47:00.002-04:002016-04-20T21:09:32.500-04:00Step 3 - Commit yourself to being comfortable around people with autism and their families<div class="separator" style="clear: both; text-align: center;">
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How does one commit one's self to being comfortable around someone with autism? First, you identify what's making you uncomfortable. Second, you figure out why it makes you uncomfortable. Third, you consider ways to think differently about the things making you uncomfortable. This whole process has little to do with the person with autism and much more to do with understanding yourself.<br />
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Because every person with autism is different, I'll start with the things Martin does that make people uncomfortable. He speaks loudly. He often ignores people trying to engage him. He invades people's personal space. He talks to himself. He wears strange clothes. He talks about obscure things that only interest him. He will follow and try to play with children who don't know him. He says he can't speak Spanish even though he can. He is melodramatic. And most important, he often doesn't comply with requests and commands made by adults.<br />
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It's this last one that really drives people over the edge. Interestingly, it bothers people in two different ways. And here, I move to the second part of this week's lesson: figuring out why behaviors related to autism make you uncomfortable. The answer is that it depends on what sort of parenting culture you associate with - old school or new school. Let me be clear: you do not have to be a parent of young kids to be a part of a parenting culture. You don't have to be a parent at all. Participating in a culture of parenting is to have opinions about how parents should raise their kids and how those kids should respond. <br />
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Old school parenting culture - I use the term "old school" because the parenting culture it describes often refers back to "traditional" practices that emphasize parental authority and children's obedience to that authority. In this parenting culture, the emphasis is on children learning their appropriate role in family and community life. Acting outside those expectations prompts discipline intended to change those behaviors. I grew up in this kind of parenting culture (as it is practiced in Amish and Conservative Mennonite communities). Children with autism pose particular problems for people associated with this parenting culture because they do not easily learn social expectations. They have trouble containing their impulses. Their brains make it difficult to understand what the community expects. People within this parenting culture often interpret behaviors related to autism as defiance to authority.<br />
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New school parenting culture - This term denotes parenting practices that have been popularized since the mid-20th century and focus more on the child as an individual. Parenting in this model focuses on nurturing the growth and development of individual children, with their particular talents, traits, and struggles. You might assume that autism would be somehow less troubling within new school parenting cultures. Let me assure you, it is not. New school parenting culture is deeply ambivalent about discipline. It's torn about what sort of discipline to use for fear of being too negative. At the same time, any one raising a kid knows that sometimes you JUST NEED YOUR KID TO BEHAVE FOR ONE MINUTE. For new school parents, autism is terrifying. These parents can hardly deal with the disciplinary struggles related to typically developing kids. When they see Martin, these parents tremble at the thought of how they would respond if their child displayed autistic behaviors. While folks associated old school parenting culture are maddened by Martin, new school folks are terrified. <br />
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If you want to get comfortable around someone with autism, you have to understand why autism makes you uncomfortable. I once had a long conversation with my aunt Elmeda, a Conservative Mennonite. It was so hard for her to understand that Martin doesn't pick up on what the community expects of him. She saw all the ways Martin acted irregularly. She expected me to use traditional forms of discipline. It made her uncomfortable that I didn't. But once she understood that those methods would not work with him, she could get over it. She could open herself to Martin as a person and to me as a parent. I don't have an analogous story to tell about someone associated with new school parenting culture. I find that these folks are highly invested in nurturing their kids using the mildest discipline possible while also shielding them from difficulty. It's hard for them to be comfortable around me as I parent Martin. I have to be very clear with him and use tools of behavior modification that make them uncomfortable. Further, Martin is also sometimes difficult. New school parents don't think their kids can handle something or someone difficult. It's hard for them to imagine how their kids might gain the wherewithal to befriend him.<br />
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If you're from an old school parenting culture, I encourage you to take a lesson from my awesome Aunt Elmeda. If you're a new schooler, I'm not sure what to tell you. I don't have time to figure it out for you. Consider this your task for autism awareness month. <br />
<br />jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com2tag:blogger.com,1999:blog-2403865598460728065.post-37758819423665934202016-04-15T15:53:00.000-04:002016-04-15T15:53:03.765-04:00Getting close to Martin: some helpful hints<div class="separator" style="clear: both; text-align: center;">
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This is a post about one single person with autism, Martin, my kid. The hints I provide can only guide you in creating a relationship with him. But they can, perhaps, also get you thinking about how to work on making closer relationships with other autistic people you might know. So here goes:<br />
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1. Be willing to accept rejection.<br />
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Because Martin is verbal, you can ask him if he wants to do something with you. He might say yes, which provides an opening for spending time together. He might say no. If he does, don't worry. It's not about you. He's probably doing something else that makes him really happy. And that something else might bewilder you.<br />
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2. Be flexible.<br />
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Most kids come up with odd things to create or do. Martin takes it to a whole new level. Being friends with him means assisting him in his imagined projects. One time, Martin asked if he could shape my long hair into the beards and mustaches of every president - in order. So I sat there while Martin moved my hair around my face, making me into a Benjamin Harrison that only he could recognize. On a recent Saturday, Martin asked me to accompany him while he looked for every single flower in his wildflowers of Texas guidebook. It took forever. And we got rained on. But Martin knows he can rely on me to be flexible, which is crucial for being his friend.<br />
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3. Stay positive.<br />
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This is a hard one. Sometimes behaviors related to autism can be really frustrating. It's completely reasonable to want to say "NO, stop doing that. It's (insert negative assessment here)." For many people with autism, especially those who have responded to ABA therapy, negativity prompts an automatic shutdown. Positive redirection and rewards are the way to help someone like Martin feel comfortable with doing something they don't want to do (or willing to stop doing something that is negative for themselves or others).<br />
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4. Be clear and concrete.<br />
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Some folks on the spectrum, including Martin, have trouble processing language. Abstraction, irony, and sarcasm don't compute for them. The best way to communicate with Martin is to use clear and uncomplicated language. It's best to focus on concrete things rather than dwell on open-ended subjects. The question that English speakers use all the time - How are you? - is not a great one for Martin. It can mean so many things. A better question might be - How is your day going? Another might be - Would you like to go for a walk or a bike ride?<br />
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5. Respond with respectful concern when things aren't going well.<br />
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When someone with autism is having a hard time, many folks around them feel uncomfortable. They might not know what to say or do so they pretend that nothing is happening. They hope that the trouble will soon pass. But it's easy for people with autism and those who care for them to feel other people's discomfort. If you can show that you see what's going on and you're not reacting with stress, that's a positive signal. If you offer help or just some moral support, your small actions go a long way. Martin can usually answer if someone asks him - Do you need help?<br />
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6. Enjoy yourself.<br />
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Martin can and will take you places you never might have imagined. He'll make you draw maps of ancient Israel, construct Lego figurines of the first ladies, and watch videos of contraptions made of dominos. He's really interesting and he'll let you accompany him on his flights of fancy if you're willing to play by his rules.<br />
<br />jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com2tag:blogger.com,1999:blog-2403865598460728065.post-4377439122205833022016-04-10T21:29:00.000-04:002016-04-11T08:00:19.087-04:00Step 2 - Commit yourself to becoming familiar with and close to people with autism<div class="separator" style="clear: both; text-align: center;">
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It took me forever to learn the importance of step 2. It was one of those cases in which you hear something, but don't really understand it until you see it enacted. Here's how I learned about step 2.<br />
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Martin attends a 5th grade class with his typically developing peers. He has support from a teacher who runs an autism-focused classroom. The teacher's name is Mr. Lambertson, but everyone calls him Mr. L. Martin is new to his school this year. To help us feel welcome, Mr. L. emphasized that the school included several classrooms focused on non-typical students. The school not only has an autism classroom, but also classrooms for kids with special behavior issues, hearing impairments, and a more generalized special ed classroom. Kids from these classes participate in varying degrees in the typical classrooms, depending on what is best suited for them at any given time. That means, as Mr. L. emphasized with us, that children at Martin's school have had lots of experience with kids who are not typical learners. They are used to being around kids with alternate forms of communication, behavior struggles, and learning issues.<br />
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While inclusion of kids with special needs was intended to make their educations better, it has also had the effect of enriching the lives of typically developing children. Kids in Martin's classes are able to watch their teachers, who have been well trained and are great professionals, interact with kids on the spectrum. By watching Mr. L. and other teachers, the kids learn about the best ways to interact with Martin. They learn the best ways to befriend him. They also learn ways to help him if he is having trouble. When they interact with Martin, they are able to see the many good parts of him. And when they see his struggles, they have some tools for how best to respond.<br />
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Our neighborhood school does not have an autism classroom. Martin is bussed to a school about 20 minutes away. He's been bussing the last four years and it never bothered me until I realized the truth of Mr. L.'s statement about the children at his school. Those kids have the opportunity to learn about the variety of ways that kids can have special needs. They get a chance to interact with kids with special needs regularly. They can become familiar with kids with special needs in a way that those kids' struggles are just one part of a much bigger picture.<br />
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The kids in my neighborhood don't have the chance to become familiar with kids on the spectrum. They don't get to watch adults who can model best practices for these interactions. Therefore, when they meet Martin it is easy for them to see his troubles first. And it is not their fault that they have no idea how to respond. No one has taught them how.<br />
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Being someone who supports kids on the spectrum and their families has nothing to do with being nice. It has no relation to how friendly or ethical you are. Symptoms related to autism can be extremely difficult to deal with. They are befuddling. They make most people feel uneasy and confused. What most people need is extended exposure to folks on the spectrum. With time comes familiarity. With time comes the realization that focusing on your confusion or wallowing in uneasiness is not going to help. At that point, you can commit yourself to staying calm and trying to see the problem from the perspective of the person with autism. This is something the 5th graders at Martin's school can do. They can do it because they see him everyday and they have learned to be comfortable with him on good days and bad.<br />
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So spend some time with folks on the spectrum. And just decide that you're going to get over your confusion and unease. Just put that away. It's not helping you. In fact, it's blocking you from being a person who can be present to someone with autism, a person who might need you to be the one to take that extra step.jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com4tag:blogger.com,1999:blog-2403865598460728065.post-9795353344421477982016-04-07T03:35:00.001-04:002016-04-07T10:15:38.063-04:00When Things Feel Terrible: A Primer on Sensory Processing<div class="separator" style="clear: both; text-align: center;">
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Martin's ABA therapist taught us a very useful question: "Can you live with it?" When Martin is obviously having a hard time with something we can ask him this question. The question acknowledges that something feels wrong. It also inquires about whether or not Martin feels that the problem is insurmountable.<br />
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We use this question with Martin when he struggles with sensory processing, which is also sometimes called sensory integration disorder. There are <a href="http://www.nytimes.com/2007/06/05/health/psychology/05sens.html?_r=0">sophisticated descriptions </a>of sensory processing problems, but an easy way to think about it is to imagine moments when things you see, hear, smell, taste, and/or sense on your skin are beyond unbearable. For me, that would be seeing mauve slacks while hearing a car alarm and smelling a wet dog all the while wearing wool in summer. That situation would make me lose my mind. I could not easily live with it. Thankfully, I can't anticipate a moment when I'll have to.<br />
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For people with sensory processing issues, this unbearable feeling produced by sights and smells (etc.) happens a lot. It can be debilitating. It has been debilitating for Martin. Here's a partial list of the the things we either avoid (or must do) to address his sensory processing struggles:<br />
<br />
<ul>
<li>No Chinese restaurants (smell)</li>
<li>No loud restaurants (which is almost all of them)</li>
<li>Wearing exercise "soft" clothing all the time, even on Easter (sensation on the skin)</li>
<li>No real haircut before the age of 6 (sensation on the neck and ears)</li>
<li>No dentist visits before age 6 (all the senses)</li>
<li>No hymn singing (which is not easy when you're born into a Mennonite family)</li>
<li>No singing "Happy birthday"</li>
<li>Sleeping in various tight-fitting spaces, such as under beds, in laundry baskets, ball pits, cardboard boxes, and once, with feet stuffed into a Tinker Toy can</li>
<li>Swimming all the time (it's one of the only totally free feelings)</li>
<li>So many foods to be avoided because of taste and smell</li>
<li>Terror at loud toilet flushing and hand dryers in public restrooms</li>
<li>Aversion to baby slobber (while at the same time adoring babies)</li>
<li>No seeds on bread</li>
<li>Sound-muffling headphones at elementary school music class </li>
<li>The list goes on.....</li>
</ul>
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Now that Martin is verbal, we can ask him whether or not he can live with situations that test the limits of his sensory processing. I can ask him if he can live with the noise level in a restaurant. I can ask him if he can live with it if I put a bowl of cooked broccoli on the table. If he can't, we can determine if a work-around is possible. We can see about sitting outdoors where the sound can escape, rather than inside where it rings off the walls. I can put the broccoli on the other end of the table and Martin can grab a fresh carrot for his veggie. Martin's ABA therapist also works with him to increase his sensory processing capacity. It's hard to get through this world if any and all singing bothers you, so the therapist sings to Martin. She starts with a 10-second song and rewards him if he gets through it. Then she increases to 20, then 30, and so on. He has learned to live with the fact that some people (including me) just love to sing.<br />
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But the question is whether or not those of us without sensory processing troubles can learn to live with people like Martin, who have a sort of visceral need to wear exercise clothing in order to feel comfortable. Can we live with people who just can't go to Chinese restaurants, even if we don't understand how the smell can really be that terrible? Can we live with people who feel compelled to make negative comments when a beautiful, precious baby is slobbering? Can we live with people who respond to lovely home-cooked meals with a distorted face and slightly rude comments about how it smells?<br />
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Martin has been asked to live with a lot of things that make him uncomfortable. He works hard at it. He has to practice it. The question is whether or not the rest of us are also willing to live with things that make us a little uncomfortable? <br />
jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com4tag:blogger.com,1999:blog-2403865598460728065.post-23492857140456519842016-04-04T20:42:00.001-04:002016-04-05T09:22:17.241-04:00Therapy<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi1x7A-AWsrFvf5KZ4R6ypYxfi78D8m_W_wRwV_YQcxWnULzlvqVmA2VGbpZBNubQLNs1Elk0hCl3Cl86AlPPL8M5B3jHPJ9tIWUQXHNCmQXZpjWOvZmV8ALdezYV6-g1wwoBCJoPbujso/s1600/Freud.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="167" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi1x7A-AWsrFvf5KZ4R6ypYxfi78D8m_W_wRwV_YQcxWnULzlvqVmA2VGbpZBNubQLNs1Elk0hCl3Cl86AlPPL8M5B3jHPJ9tIWUQXHNCmQXZpjWOvZmV8ALdezYV6-g1wwoBCJoPbujso/s200/Freud.jpg" width="200" /></a>There are many reasons for the creation of Autism Awareness Month. One of them is the impact of early detection and intervention in the lives of children with autism. A common understanding among the varieties of doctors, therapists, and educators who work with people with autism is that the earlier the intervention, the better a child's chance to overcome some of the more debilitating aspects of the disorder. It's typical for pediatricians, psychiatrists, and neurologists to recommend a variety of interventions: a therapy called Applied Behavioral Analysis (ABA), speech therapy, occupational therapy, talk therapy, family therapy, and any of several possible medications that are otherwise used to address anxiety, ADHD, and impulse control. There's no definitive autism therapy cocktail. And it's not just because every kid with autism is different. It's that there is no handbook. There's no social worker or guide. Parents are often left to make up their own therapeutic regimen based on professional recommendations, online research, provider availability, insurance coverage (or lack thereof), and an assessment of the mental and physical wherewithal they have for all these therapeutic endeavors.<br />
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Even though it has overwhelmed our lives at times, I am grateful for the therapies that we've engaged for Martin. ABA has made possible everything from speaking sentences to toileting, from trick-or-treating to playing tag. Speech therapy gave Martin all the structures he needed to talk, converse, and understand. Occupational therapy allowed him to kick a ball, use scissors, and tie his own shoes. Family therapy has provided my husband and I all sorts of guidance for the parenting challenges we have faced. And medicine, well, I am grateful for it. Medicine has provided Martin a little help with impulse control. It has helped us immensely.<br />
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I would not be doing this week's duty of teaching readers about autism without mentioning that each of these therapies is also controversial to some degree. Many folks in the neurodiversity movement and autism self-advocacy networks are critical of therapies designed to "overcome" autism. They argue, instead, that society should learn to embrace a variety of ways of being in the world. They ask, for instance, why therapists make kids with autism work on eye contact. Why can't the rest of us just get used to a conversation without it? Some go further and wonder why the push for speech. They encourage folks without autism to consider that there might be ways to communicate without words.<br />
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This article from the <i>New York Times</i>, "<a href="http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?_r=1">The Kids Who Beat Autism</a><span style="text-align: center;">," speaks to the many therapies that are used with kids with autism. It also explores the ambiguities that parents face. I hope you find it helpful.</span>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com0tag:blogger.com,1999:blog-2403865598460728065.post-70076191504034820892016-04-02T11:55:00.000-04:002016-04-02T11:55:05.025-04:00Variety<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqH_0PXqxqw8M0gYAFJGFID0jP4vOV_iD56TMDJD0vT5yQHSFT9i8Si97ItLHjjI0j5ydd9FGWJI23VGx8B3jtSpVAi2jqRpZj-Z1ofLUxckl_bS1Lj5MqEN_LKI-9MM9lQ5eNHbiP-NYF/s1600/Wildflowers_31.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="141" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqH_0PXqxqw8M0gYAFJGFID0jP4vOV_iD56TMDJD0vT5yQHSFT9i8Si97ItLHjjI0j5ydd9FGWJI23VGx8B3jtSpVAi2jqRpZj-Z1ofLUxckl_bS1Lj5MqEN_LKI-9MM9lQ5eNHbiP-NYF/s200/Wildflowers_31.jpg" width="200" /></a></div>
The autism spectrum includes people who speak and people who don't. People who use the toilet and people who need diapers. People who struggle to understand social expectations and people who figure them out. People who are great conversationalists and people who would rather not converse. People who memorize stuff and people who don't. People who hug and people who would rather not.<br />
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It's all sorts of people. Here are a few resources that exemplify the variety, the labels that are sometimes used to describe that variety, and the shortcomings of those labels.<br />
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<a href="https://www.youtube.com/watch?v=Vju1EbVVgP8">"Ask an autistic"</a> - Video series made by a woman on the autism spectrum. In this segment, she explains what autism is from her perspective.<br />
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<a href="http://www.thisamericanlife.org/radio-archives/episode/317/unconditional-love?act=2#play">This American Life, episode 317, Unconditional Love, act 2</a> - A father of a severely autistic child faces decisions about his son's future, including whether or not he can continue taking care of his child at home. (Listener note: have tissues handy)<br />
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<a href="http://www.theatlantic.com/health/archive/2016/04/the-language-of-autism/476223/">"Where the Vocabulary of Autism is Failing"</a> - An Atlantic article about how labels such as high-functioning and low-functioning obscure as much as they illumine.<br />
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It's hard to say where Martin is in relation to the cases presented in these examples. He's not like the woman in the first video, Amethyst, who clearly has no trouble speaking. Martin could not put sentences together, even at age 3 and 4. Learning to speak and have conversations took years of speech and ABA therapy. Martin is not like Ben in the second story. Martin is verbal. Martin sleeps. But like Ben, he has had meltdowns that have taken us to the emergency room. The final article speaks to the strange set of characteristics that Martin has. He is "high-functioning" in many ways and "low-functioning" in others. The power of that article comes in its acknowledgement that every story involving autism is different, which means becoming friends with every particular person with autism requires patience and diligence and openness.<br />
<br />jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com0tag:blogger.com,1999:blog-2403865598460728065.post-92131601406352976132016-04-01T10:50:00.001-04:002016-04-01T10:50:27.760-04:00Let's Radicalize Autism Awareness Month, Motherscratchers!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4_AHRSfuLubVQrkFCFhXurQf9FgO7nBBF7287C8rELRIaM7uH9ne_Cn-HrzgqqbcDPkA6u77DnnjPESBx6UWpNw4dUuGrCX0JTDblF8UndW7JOzuVqKwmzoB2E9Soz0481O-YI-vwH0nI/s1600/autism-awareness.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4_AHRSfuLubVQrkFCFhXurQf9FgO7nBBF7287C8rELRIaM7uH9ne_Cn-HrzgqqbcDPkA6u77DnnjPESBx6UWpNw4dUuGrCX0JTDblF8UndW7JOzuVqKwmzoB2E9Soz0481O-YI-vwH0nI/s1600/autism-awareness.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="163" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4_AHRSfuLubVQrkFCFhXurQf9FgO7nBBF7287C8rELRIaM7uH9ne_Cn-HrzgqqbcDPkA6u77DnnjPESBx6UWpNw4dUuGrCX0JTDblF8UndW7JOzuVqKwmzoB2E9Soz0481O-YI-vwH0nI/s200/autism-awareness.jpeg" width="200" /></a></div>
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I hate Autism Awareness Month. I know the educational pieces produced for this month are intended to help non-autistic people understand more about what it's like to be on the spectrum. But I sometimes feel that these efforts also make it so that non-autistic folks know more about the spectrum and, therefore, are even more relieved that it doesn't affect them or their kids. Perhaps I feel this was because every April I experience an uptick in messages that say things like, "I don't know how you do it." The authors might as well be saying, "Thank God, it isn't me."<br />
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Martin and I don't really need the world's awareness. We need the world's transformation. So I would like to declare April "Get Your Shit Together Concerning Autism" Month. This process involves four easy steps, which can nicely correspond to the four weeks in April.<br />
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Step 1 - Learn about autism in its many forms.<br />
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Step 2 - Commit yourself to becoming familiar with and close to people with autism.<br />
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Step 3 - Commit yourself to being comfortable around people with autism and their families.<br />
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Step 4 - Become a positive presence around people with autism and their families.<br />
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This week, I'll post some resources related to Step 1. I'll start today where all my undergraduate students start their inquiries: <a href="https://en.wikipedia.org/wiki/Autism">Wikipedia</a>. I'll add some more interesting stuff in the coming days: journalist pieces about various therapies, videos by adults with autism, some books about the history of this diagnosis, etc. There's a lot of stuff out there that can help you understand the many ways people inhabit the spectrum. But that is only the first step.<br />
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Martin has two behavioral therapy appointments a week. He takes medication. He has endured thousands of hours of speech, occupational, behavioral, horse, and talk therapy. He is already working hard enough. It's your turn, readers. Get ready to get your shit together. The world will not get better for people with autism if you know more. It will get better when you change.jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com1tag:blogger.com,1999:blog-2403865598460728065.post-61428087471672658442014-09-01T08:46:00.001-04:002014-09-01T08:48:31.145-04:00An open letter to the members of OK Go<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7IU_juAb2sI4K8usXB_05o_S8lx_es6PYNW4iGnePSMcRkiT7VfqT0YFBasA-JVGKhToHDinrA1W3TobV-t_-3M7AFYBg4ajGR-1Tn_ePBW6wfx_WbIdCVwbksRZ3ty9jsRzqypSviSJw/s1600/ok-go-03.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7IU_juAb2sI4K8usXB_05o_S8lx_es6PYNW4iGnePSMcRkiT7VfqT0YFBasA-JVGKhToHDinrA1W3TobV-t_-3M7AFYBg4ajGR-1Tn_ePBW6wfx_WbIdCVwbksRZ3ty9jsRzqypSviSJw/s1600/ok-go-03.jpg" height="212" width="320" /></a></div>
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Dear Damien, Tim, Dan, and Andy:<br />
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I know you by name. I watch your videos all the time. Your pictures hang in my living room. But I'm not a creepy stalker. I'm simply the mother of Martin, who has made you and your music the subject of what I call "autistic devotion." His past devotions have been United States presidents and maps of Africa. These devotions include intense study as well as creative elaboration. And while your own work is already elaborate, let me list the ways Martin riffs on you:<br />
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1. Martin has built you out of legos. The lego figures wear different outfits that correspond with the costumes in your videos.<br />
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2. He uses Dungeons and Dragons figurines to recreate the marching band formations from the "This Too Shall Pass" video.<br />
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3. He learned the xylophone part to the same song and plans to play it at an upcoming church talent show.<br />
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4. He built the car from the "Needing/Getting" video out of legos. He drives it all over our house singing. He would also like to build a machine that includes all the instruments from this song so that he can play them all at once.<br />
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5. He has drawn the parts of the Rube-Goldberg sequence from the second "This Too Shall Pass" video on a roll of paper. He can draw it from memory.<br />
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6. He has planned your visit to Austin and designated sites for you to sing your songs. He wants you to recreate the "Here It Goes Again" treadmill sequence at our nearby YMCA. He's still figuring out how to procure the dogs necessary to recreate "White Knuckles." He's stumped about how to get marching band uniforms. He's hoping Goodwill might deliver.<br />
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7. I could keep going.<br />
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On the one hand, I would love for him to meet you. To that end, we are taking him to your upcoming concert in Austin. On the other hand, he would be paralyzed by the fact that you are real people. In his mind, you are only what he has seen on the screen and heard with his ears. In his perfect world, he would use you like real-life figurines to recreate all the scenes he loves. He would not know what to do if you expressed ideas of your own or if you resisted his plans.<br />
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This is why I never attempted to get him a handshake with Obama, even though everyone we know has said it would be great. "He loves presidents. You should do it," they say. It's true that he loves presidents and that his autistic devotion has led him to learn more facts about presidents than anyone else I know. But I also know that Martin would want to tell Obama what to do. To ask only questions that interest him. Martin would not follow Obama's directions. He would not answer Obama's questions. And my guess is that a president would not appreciate that.<br />
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So Martin dreams of meeting you, but not a real-life meeting. He envisions a meeting that fulfills the dreams of his autistic devotion. In that sense, he loves you like teenagers love. Intense, but not really grounded. The stuff of great love letters, but perhaps not real-life encounters.<br />
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In conclusion, I love your music and crazy videos. But my kid loves you more and with a kind of purity and energy that we adults can only remember fondly from our youth. If you'd like to meet your biggest fan and can accept him on his terms, we'll be at your concert in October.<br />
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All the best,<br />
Rainmomjen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com0tag:blogger.com,1999:blog-2403865598460728065.post-26611924122223438782014-08-24T15:01:00.001-04:002014-08-24T15:01:32.211-04:00your reward shall be in....the lego store<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeXWOc73Zg73OyLAxUWC4OGQlaqiS9pJpHgPxBwi1mdAzdUtXgLpxcGBhOqyyFeAHSbTo617Z1T02VIgx0a-JXFo1VFm6V6xQ7OFOSuNq6rQnUBMDTTdnVMKcxa8TCd22quiy5fHt0KGQs/s1600/10667_front_11.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeXWOc73Zg73OyLAxUWC4OGQlaqiS9pJpHgPxBwi1mdAzdUtXgLpxcGBhOqyyFeAHSbTo617Z1T02VIgx0a-JXFo1VFm6V6xQ7OFOSuNq6rQnUBMDTTdnVMKcxa8TCd22quiy5fHt0KGQs/s1600/10667_front_11.jpg" height="188" width="320" /></a></div>
People, things are getting better! And they were really bad there for awhile. The list of interventions over the past few months includes a new doctor to manage medicine, a new counselor, a new ABA therapist who comes to our home, a social worker, and a few occupational therapy sessions. It has taken a lot of time. And money. But people, we are starting to see some results.<br />
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Martin went to church today and had fairly good behavior. He has not been to church in weeks because he knocked someone over and regularly yelled and hit. Although school was a nightmare for him back in April and May, he now says he's looking forward to its start tomorrow. Although he sometimes still struggles with following the social rules of the world, he has been going to places like the pool and the YMCA without much incident. It feels like a miracle.<br />
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To be more scientific, that miracle has been realized through ABA therapy. You can find a good synopsis of this once-controversial, and now generally accepted therapy, as part of <a href="http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?_r=0">this article</a>. Most basically, ABA involves breaking down daily tasks and behavioral expectations into tiny chunks. When children perform one of these small acts correctly, they receive rewards. When Martin had ABA therapy as a 4-year-old, he was rewarded for answering yes-or-no questions and making two-word sentences. He was then motivated to work for the rewards offered for three words and four and so on. With ABA, Martin learned to talk.<br />
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Martin's current ABA therapy is focused on behavior. It establishes a set of expected (or good) behaviors as well as unexpected (or bad) behaviors. As part of the therapy, we check in with Martin every 15 minutes of the day. He gets checkmarks for every 15 minutes of expected behavior. When a certain number of checkmarks add up, Martin gets a reward. On the flip side, we ignore bad behavior. Even if Martin screams at us or hits or kicks, we pay no attention to it. The goal is that Martin learns that bad behavior does not get him what he wants. Good behavior does.<br />
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Martin is currently at the lego store because he made it through church this morning. I know that some of you might think, "Wow, buying kids legos to fulfill basic family obligations? No way." If I didn't have a kid with autism, I'd feel the same way. If a kid can apprehend the rules parents can and should create the expectation that these rules be followed. But what if your kid can't apprehend the rules? What if no amount of explanation gets through? What if the only way to learn it is to do it BEFORE understanding it?<br />
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Since Martin got through church today and received a reward for it, it will most likely be easier for him to go next week. And we won't need as big a reward as incentive. Perhaps some ice cream after lunch. The hope is that rewards will no longer be necessary within a few weeks. And then we'll have a kid who understands that he's capable of going to (and maybe even enjoying) church.<br />
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Right now, we're still breaking down our days into 15 minute blocks. But soon it will be 30 minutes. And then hours. If I really let myself dream, I think about a time in the near future when there are no charts and checks necessary. And Martin is happy. And I'm happy. I will buy a lot of legos now in order to have the chance of such a day in the future. jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com2tag:blogger.com,1999:blog-2403865598460728065.post-41872621620795721992014-08-13T08:42:00.000-04:002014-08-13T08:43:17.091-04:00You can go your own way<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb4tO8CwVFeT2cTFBepVsUZhonltT3thcqyU7heeYYqapuR8xMRVFHUnYQrYHXSkTdXgVWSOzxZvMO_Nvwb23haGW2b3vQES7edU8mrGk_6xsqDhY4478RHNNM_d9IUBMqFE3ZL_biVVzU/s1600/images.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb4tO8CwVFeT2cTFBepVsUZhonltT3thcqyU7heeYYqapuR8xMRVFHUnYQrYHXSkTdXgVWSOzxZvMO_Nvwb23haGW2b3vQES7edU8mrGk_6xsqDhY4478RHNNM_d9IUBMqFE3ZL_biVVzU/s1600/images.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">https://www.youtube.com/watch?v=6ul-cZyuYq4</td></tr>
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I just returned from a blissful vacation hiking the California coast. The day I got home I took Martin on a special outing to the roller rink. Martin is an excellent skater. He's had roller skates for a few years and loves to zip around the neighborhood. Everyone smiles when Martin skates.</div>
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Even though Martin skates quite often around our house he has rarely been to roller rinks. It was a huge delight for him. When we walked in the door his eyes grew big. "This place is amazing," he said. I helped Martin lace up his skates and started working on my own. Before I could finish mine, Martin was out on the floor.</div>
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When I looked up I saw the most magical and scary thing. 150 people skated counterclockwise while Martin went the other way. As people flew by him he simply charged forward with a look of joy, howling at the top of his lungs. He was thrilled. I was fascinated and terrified. </div>
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Martin seemed to have no idea that everyone else was doing things another way. That's quite typical with autism. Folks like Martin simply don't seem to apprehend the rules. There is something quite beautiful about it. But there are also dangers. I rolled onto the skate floor, caught up with Martin, and asked him to pay attention to my eyes. I told him that everyone needed to skate the same way. He would have to join the others skating counterclockwise. He looked at me with total surprise and said okay. He began to skate with everyone else and things were fine for a little while. But after he took a break and entered the floor again, he went the wrong way once more. Again, I told him he needed to go the same way as everyone else and again he looked at me with a little surprise and said okay. </div>
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With autism, you have to say the rules over and over and over. Not only can you not trust that folks with autism will apprehend the rules on their own, but you also can't be sure that the rules will stick in their heads once you've communicated them. Your best chance is to make the rules available visually by creating a social story. Social stories are little books in which the rules are written down and illustrated. I've written many social stories over the past few years: social stories about getting on airplanes, social stories about where it's appropriate to pee, and social stories about going to the zoo. But at the roller rink I didn't have the capacity to make a social story and I could tell that the rules I told Martin with just my voice were never going to stick. If he's ever to learn that he needs to skate counterclockwise, he'll need to see it written down. </div>
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Our society let's certain people go their own way. Great artists. The filthy rich. Toddlers. It's also the case that certain people feel they have no chance to do things in a different way. Imagine if Martin had brown skin. Imagine him growing up into a tall teenage boy who doesn't follow every rule and might not understand when a police officer commands him to do something. It's a question of privilege. Who's allowed to go their own way? By our society? By the police? By the roller rink staff? </div>
jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com0tag:blogger.com,1999:blog-2403865598460728065.post-49583053217963264722014-07-31T08:09:00.000-04:002014-07-31T08:09:17.293-04:00Bells and earsLast night, I cried like a baby in front of 40 people at a public pool. The day itself had not been terrible. In fact, some good things happened. But I was tired and someone said something. And it was too much.<br />
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Perhaps it was too much because yesterday at 7am Martin had to get his annual blood draw to make sure that his medication is having no adverse effects on his body. I did not attend this blood draw. I just couldn't. My husband and father-in-law did the work. It wasn't pretty. There were full-body holds and lots of screaming and yelling involved. But the techs got the blood. And then the guys went out for breakfast. Martin came home and slept.<br />
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Perhaps it was too much because at 10:30 I took Martin for an occupational therapy evaluation and we were able to complete about 25 minutes of what was to be a 90-minute appointment. We were in a new place with new people. These people asked Martin to do things like bounce a ball, jump on a trampoline, and tie his shoes. Even though the appointment didn't go so well, the therapists were able to make an evaluation and we will get started with some appointments next week.<br />
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Perhaps it was because we had a two-hour appointment in the afternoon with an ABA therapist. She was AWESOME. When we called her last week and explained our situation, she recognized our struggles and worked around the usual wait-list for services. She will come to our home for appointments. She is drafting a behavior plan to help us overcome and end Martin's worst behaviors: the kicking, screaming, throwing things, hitting, and pinching. But she was clear with us. Things will get worse before they get better. The behavior plan calls for Martin's caregivers to do things that will completely piss him off. She told us to buck up for the next few weeks.<br />
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Perhaps that's why - by the time I got to the pool last night - I just needed for my kid to swim happily and freely. I just needed to sit by the poolside quietly and watch him enjoy himself. And so when a parent came to me to tell me about the way Martin had "traumatized" his daughter at the pool several days ago and when that parent kept repeating this information over and over even after I said that I had heard him and would take care of things - well, I just didn't have it in me to keep it together.<br />
<br />
While I don't get to read much about medical care outside of autism, I'm really interested in it. I've heard about two studies recently that have made me think a lot about my own situation. In the first, researchers found that parents of children in NICUs experience months of PTSD-like symptoms even if their child survives and eventually flourishes. Just the experience of being in the NICU - with its constant alarms and sense of crisis - leaves parents scarred for months. Living with the possibility of death at any moment makes these parents of newborns more like Iraq veterans than like those of us who have never stepped foot in a NICU.<br />
<br />
My friend is the researcher for another study. She studies palliative care techniques and their effects on families. She devised a study - informed by therapeutic responses to veterans with PTSD - in which family members who have made end-of-life care decisions get to tell their stories to an empathetic listener with no connection to the ill person. My friend has found that family members feel better and show fewer symptoms of trauma when someone just listens to them without judgement.<br />
<br />
Thinking about these studies helps me understand why I broke down at the pool yesterday. It had not been a terrible day. In fact, I was incredibly grateful to have gotten the ABA therapy process initiated. I went to the pool hoping for a little moment of happiness for both Martin and myself. Instead, I got talked to. The alarm bells went off. It was a crisis when I wasn't expecting one. And when I tried to respond, the parent wouldn't listen. And the parent certainly judged.<br />
<br />
The takeaway? Let's not be people who set off alarm bells. And let's be people who listen.<br />
<br />
PS - The movie is coming along!<br />
<br />
jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com3tag:blogger.com,1999:blog-2403865598460728065.post-27057795670010900322014-07-29T06:53:00.001-04:002014-07-29T06:53:55.386-04:00When you can't write and can hardly move forward, make a movie!There is some progress to report. The new behavior chart from the therapist is making a difference in Martin's choices and behaviors. It's not a dramatic difference, but we've seen some changes. We have finally worked through the process of identifying and scheduling an in-home ABA therapist's visit and some occupational therapy. I have also submitted an appeal to my employer's office that handles insurance coverage (or in our case, lack of coverage). Things are happening.<br />
<br />
But it mostly feels like they are not happening. Yesterday, Martin still had some explosions. He kicked and pinched me at a public pool. He yelled at some children who stared at him in disbelief. His behavior at church on Sunday was the same old pattern of quiet interrupted by inexplicable physical and verbal chaos. Getting the new therapy appointments on the calendar seems to have taken forever. The insurance appeal will surely be turned down. And I can't finish a paper that's supposed to be drafted in less than a week. <br />
<br />
So I am making a movie. Completely rational choice, right?<br />
<br />
And I'm trying to make it through these long days with Martin, hauling him from playscape to pool to museum to YMCA in an effort to keep him busy and eventually make him exhausted.<br />
<br />
You're all invited to the movie premier a few days from now.jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com1tag:blogger.com,1999:blog-2403865598460728065.post-59079612993641275992014-07-19T22:49:00.003-04:002014-07-19T22:50:09.075-04:00The Long Summer Days<div class="separator" style="clear: both; text-align: center;">
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Martin had a pretty good day. After grunting and growling in the early morning hours, along with socking his father in the side of the head, Martin pulled himself together and managed to have a fairly happy day. Here's how we managed to make that happen:<br />
<br />
8:00am - Breakfast<br />
8:15 - Second breakfast<br />
10:00 - Visit nearby children's museum<br />
1:00pm - Go to the Lego Store to buy a few accessories necessary to create a set of Lego people who look like U.S. presidents<br />
4:00 - Swimming at neighborhood pool<br />
6:00 - Walk and wagon ride along Lady Bird Lake boardwalk<br />
8:00 - Ice cream parlor<br />
<br />
You might be thinking, "Wow, that's a lot of activity for one day. Museum. Store. Pool. Lake. And an ice cream shop?" But that's what it takes to fill up a summer day with Martin. And this wasn't even a particularly busy day by our family's standards. Further, we have to stay this busy every summer day, not just on weekends.<br />
<br />
Again, you might be wondering, "Why doesn't she just send him to a day camp or summer camp where the schedule is jam packed with everything from macrame to boating to romanticizing American Indians from dawn til dusk?" That is an excellent question, dear reader! The answer is that I can find only a few camps (daytime or sleepaway) that would take him and they cost A LOT.<br />
<br />
"How much could it be," you might be wondering. Or, "It's your child. Isn't he worth it?" Let me tell you how much it is. I have found one possible day camp in Austin. For 12 hours a week the cost is $350. That's only for Martin. I would have to find other arrangements for his sister or I could send her along for another $325. I'm a middle class person with a nice job, but I can't pay more than $3000 for even a terrific facility to watch my kids for 48 hours of work time. Same problem for sleepaway camp. I have found three camps that can not only accommodate Martin, but also address his particular needs. They look incredible. The cheapest one is $1200 for a 5 days. Is my child worth that? Yes. Is summer camp worth that? Unless it's that awesome camp in Dirty Dancing and Patrick Swayze comes back to life to work there and look earnest, then the answer is no.<br />
<br />
So I have a situation in which I must find a way to keep Martin very active and busy all summer long. Luckily, a friend from church volunteered to work as a part-time babysitter four mornings a week. I get the kids ready in the morning. She comes over, takes them on outings, and keeps them busy while I try to write a few pages, read a few chapters, or plan a few syllabi. I then take over and keep the kids busy in different ways until my husband comes home at dinnertime. This schedule is unrelenting. Saturdays and Sundays require even more effort. It is utterly exhausting.<br />
<br />
In an unusual action, I recently wrote to my in-laws and asked them to come help us. My father-in-law drove 1400 miles in two days and arrived here yesterday. Just having one more adult around makes this constant activity a little easier. He took Martin to the museum. Then my husband led the outing for Legos. Later, I hustled the kids to the pool. I'm so lucky that my father-in-law has committed to staying for two weeks. Just knowing I won't have so many hours each week in which I'm solely responsible for being mother, camp director, tour guide, cook, and psychiatric nurse is a huge relief.<br />
<br />
If your kids have quality, affordable options for care over the summer, hug the people who do this work. We need more of them and more resources so that every kind of kid has similar options.<br />
<br />
jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com2tag:blogger.com,1999:blog-2403865598460728065.post-18450752519853202092014-07-15T17:13:00.002-04:002014-07-15T21:01:25.460-04:00Dr. Turner's Manure Versus the $2095 Sedative<div class="separator" style="clear: both; text-align: center;">
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Dr. Turner served as my family's doctor. He was a general practitioner who also functioned as obstetrician and pediatrician. He worked out of a small brick office with his only other staff member, a nurse who also handled reception and bookkeeping. The office was beside a shoe repair shop run by a cute old man named Stanley.<br />
<br />
To make this evocation of the past even more quaint, I offer two details. First, Dr. Turner made house calls. When I, along with my two siblings and mother, came down with chicken pox, Dr. Turner headed out to our house rather than make my poor father schlep us all into town. Second, Dr. Turner accepted cash as well as goods for payment. We paid most of our medical bills out of pocket. Along with cash, my dad showed up every spring at Dr. Turner's garden with a truckload of manure from our farm. They called it even.<br />
<br />
The mid-70s. An era when you could still pay your doctor with manure. I thought of Dr. Turner a few days ago when I received a bill related to Martin's recent emergency room visit. In mid-May, we followed our (former) neurologist's advice and tried to ween Martin off a drug he takes for impulse control. Our neurologist wanted us to focus on behavioral interventions rather than rely on medications, as well as foreclose on the possibility of negative side effects from the meds. We followed his advice and disaster ensued. Martin became uncontrollable. He screamed. He hit. He kicked. Most incredibly, he ate leaves off the neighborhood sycamore trees.<br />
<br />
A few days into our experiment off meds, Martin experienced an extreme tantrum. I thought he might break the door I locked between him and me. I took him to the emergency room, explained the situation, and asked for a psych consult.<br />
<br />
What's funny about emergency rooms is that the staff interact with you as if you are not in the midst of an emergency. At least three different staff people slowly took us into different rooms. Martin's blood pressure was taken at least three times. As Martin became increasingly agitated, a sage nurse looked at him and said, "Martin, you're not allowed to hit anyone." As if simple commands worked in this situation. My husband and I tried to keep Martin calm as myriad staff members came into the room, repeating questions and examinations. There was no doctor in sight. We asked for wifi access so that Martin could watch a movie that might soothe him on our phone. Somehow, the wifi was impossible to access. A clueless nurse offered us a DVD player with some random movie. "I don't think you understand autism," I told her.<br />
<br />
Things got a lot worse before they got better. Martin started hitting and kicking again, which promoted the charge nurse to call the hospital police. Now, Martin faced men in uniform who were there to hold him down if he continued to act out. Finally, a doctor arrived into this messy situation. The doctor called for a neurology consult. It took forever. Finally, the doctor advised a dissolving sedative to calm Martin down. It took six of us, including the three hospital police, to hold Martin down and get the tablet on his tongue. Martin was terrified. I was mortified. Trauma all around.<br />
<br />
We saw at least a dozen healthcare professionals (as well some security professionals) during that visit. The ER doctor was never able to contact our neurologist to ask about his recommendation to go off the meds. There was no coordination between the two, despite the fact that their offices are about 100 yards apart. Of course, these medical professionals have no contact with Martin's teachers and the educational professionals who create his alternative learning plans. And these folks have no contact with the behavior therapist and horse therapy people we also work with. I recently had an appointment with a county office that offers a sort of case manager service for kids with autism. It costs $250 a month. They don't accept insurance.<br />
<br />
I miss Dr. Turner and his nurse and the shoe repair man next door. Dr. Turner delivered me when I was born and I attended his funeral. I miss the attention he gave his patients. I miss my doctor who knew my story. At the same time, I know that Martin would not have fared well in the 1970s. A child who showed his lack of capacity to speak would have been recommended for institutionalization. I would have been blamed for being a "refrigerator mother."<br />
<br />
So I ought to be (and basically am) quite grateful for the therapies and services available to us. Martin didn't learn to talk the way most of us do, but he did once he experienced alternative methods. Our healthcare and educational bureaucracies make this possible. Martin has a chance to flourish because of these expanded bureaucracies.<br />
<br />
But no one loves a bureaucracy. We usually distrust them and feel slighted by them. When we see a charge of $2095 for an ER visit marked by lots of trauma and one lousy pill, we feel robbed. A friend of mine is writing a book on the lure of small things in American history. I thought of his work when I got the bill and thought of Dr. Turner's truckload of manure. I long for the small and simple even as I benefit in substantial ways from the large and complex.<br />
<br />
Maybe a truckload of manure can take on new meaning in our new situation? Perhaps I have a delivery to make to the ER?jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com3tag:blogger.com,1999:blog-2403865598460728065.post-10921344042583580172014-07-11T06:02:00.000-04:002014-07-11T06:02:15.535-04:00She's Back: Or, Rainmom Describes Varieties of Stink Eye I wrote this blog about Martin and autism in 2009 and 2010. I stopped during a particularly difficult time in Martin's life. And even when things got better, I failed to start writing again. The blog has sat dormant for four years.<br />
<br />
Things did get better for awhile. Second grade was good. Third grade was good. Fourth grade, however, brought serious challenges and real setbacks. Aggressive behavior. Self-awareness of disability and difference. Medication difficulties. Even an emergency room visit.<br />
<br />
But even that disastrous medical intervention did not prompt me to take up blogging again. Instead, it was my experience today of receiving not only some serious stink eye, but also the chance to witness the transformation of that stink eye into a look of pity typically reserved for baby seals and child refugees.<br />
<br />
Let me explain. Today, Martin had a dentist appointment. Dental care and autism are no easy mix. Consider the challenges: weird environment, people in masks, instruments jammed in your mouth. Martin was almost six before he had a thorough dental exam and cleaning. That delay took its toll on his teeth. Just last year, Martin's dentist recommended plaque scraping, a crown, and sealant for some of his more vulnerable teeth. First, the dentist tried laughing gas to relax Martin for the procedure. It didn't work. We then rescheduled and employed the big guns: anesthesia. Dental success.<br />
<br />
Martin's appointment today was his first cleaning since last year's procedure. He was already having a tough day. He didn't want to go. Like a fool, I didn't cancel. I pressed ahead. We arrived at a lovely office. The staff was terrific, even when Martin shouted and growled. We tried our best to make him feel at ease. At times it worked. The dentist cleaned eight of his teeth and gave the rest of them a careful look. I count that as a small success, overshadowed unfortunately by Martin taking a swing not only at the dentist, but also at the dentist's wife.<br />
<br />
At the appointment's end, I left in despair. I decided to take the kids to the nearby grocery store that has a playground for shoppers and their kids right outside. We arrived. I escorted the kids to the play area, watched them begin to run around, and then told them I was stepping inside to pick up a coffee. I was gone for two minutes. That was a mistake. I shouldn't have left for two minutes, even though all I wanted in the world was a nice coffee drink to sooth my sadness about the dentist office. I shouldn't have left.<br />
<br />
I came back to find an approximately 13-year-old girl gaping at me. As I got closer to the playground's edge, she asked me if the boy wearing the black shirt was my son. I said he was. She then informed me that my son had made her little sister, approximately age eight or nine, cry. "What did he do?" I asked. She replied that he had chased her and growled at her. The younger sister then looked at me, tears falling down her cheeks. She was being held by her mother, whose back was to me at the time. At this moment, the mother turned toward me and delivered a serious stink eye. We are talking Meryl Streep plus Lucille Bluth added to that <a href="https://www.youtube.com/watch?v=SJLv7pXmaxM&feature=kp">girl from Juno</a>. "I'm sorry," I stammered. "I will take care of it." At this point, the stink eye transformed into what only can be called a frozen stink eye, by which I mean the effort the stink eye giver takes to freeze the position in order to be sure the offender has seen it.<br />
<br />
I walked over to Martin. I asked him what happened. He admitted that he had chased the girl and growled at her. He said that she bothered him. I take this explanation with a grain a salt. Martin thinks everyone is bothering him, that everyone is laughing at him. He is almost always wrong. I tell him that his actions scared the girl and that he needed to apologize. He walked with me over to the stink eye/gaping/tearful trio and said, "I'm sorry that I scared you. I didn't mean to." They looked confused. One of them said, "OK."<br />
<br />
Martin and I walked away. But the stink eye remained. It stayed in place as Martin began to play again. It prevailed as I drank my cup of coffee, which was now no solace, but rather a sign of my mistake. As we prepared to leave, I saw the stink eye. It was still there! The mother was still mad at me. I decided to pull out the big guns once again. As I passed by her, I said, "My son is on the autism spectrum. Social situations can be challenging for him. I thought he'd be OK for a minute while I went inside, but I was wrong." The stink eye disappeared. Concern, sympathy, and sadness replaced it. Mother Teresa-face. I-feel-bad-about-the-Holocaust face. "It's OK, then," she reassured me. I wasn't a bad mother. I was a pitiable one. <br />
<br />
This encounter destroyed my day, even more than the terrible visit to the dentist. I'm used to Martin's aggression. I'm used to failed enterprises. But I never get used to how people respond to autism. I've encountered everything from screaming to disdainful looks to half-baked dietary advice to saccharine-tinged smiles that mean to be nice but really say, "Thank God it's you and not me." And for those of you who wonder what you can do, I can only say this: from my perspective there is nothing you can do. There is no right response. I will probably react negatively to just about anything you offer. Because it is me and not you.<br />
<br />
That's why I stopped writing in 2010. Because I could no longer tell this story to people outside of it. And I'm not really sure why I'm trying again. jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com4tag:blogger.com,1999:blog-2403865598460728065.post-71149256254305871992010-09-20T21:07:00.003-04:002010-09-20T21:25:55.222-04:00christmas colors<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEMf6gCcyeWPyN7AIieFbyqqSHJn_DM9cAHT_HnobcNIQPok8nIDSO-fha8QqC3wXx4BcHK7iKpTQH3-raBpzJBE7oycmXavj77h_680J0mbBNuX3r3l3q1hmpR67dEUcvp3fcpmhtglug/s1600/images.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEMf6gCcyeWPyN7AIieFbyqqSHJn_DM9cAHT_HnobcNIQPok8nIDSO-fha8QqC3wXx4BcHK7iKpTQH3-raBpzJBE7oycmXavj77h_680J0mbBNuX3r3l3q1hmpR67dEUcvp3fcpmhtglug/s200/images.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5519170566471577746" /></a><br />There's a popular system for regulating elementary school behavior. Good behaviors merit a designation of green. With lots of green days, a kid can earn a prize. A few bad incidents might merit a yellow or a blue. The yellow means you had an outburst, but managed to pull it together. Blue means you couldn't pull it together right away, but could eventually. Like soccer, red means you exhibited really bad, and basically unrepentant behavior. At school, Martin always gets either green or red. There is no middle ground.<div><br /></div><div>It's the same at home. The past two weeks have been either heaven or hell. At times, Martin has been inquisitive, warm, and hilarious. He's learned all the first ladies. He's learning the vice presidents. He plays in a tent we set up in the backyard. Today, he invited a friend to go to the playground with him and, without prompting, thanked the friend when we dropped him off afterward. There are moments when you look at him and forget that he has an autism diagnosis. There seems to be nothing in between him and the rest of the world.</div><div><br /></div><div>But then it comes back. Usually we have no idea why. But something will set Martin off. And then there is scratching and hitting, yelling and kicking. He's so frustrated about something, but he can't say exactly what. And even when he can express his desire, he can't handle it if the request is denied. For instance, he demands that I carry him. I simply cannot do it anymore. He's just too big. When I tell him I can't, you'd think I just denied him candy for the rest of his life, or oxygen. The response is so instant and so dramatic. And I can't do anything. I certainly can't give him what he wants. And I can't seem to find a way to convince him that life might be OK if I don't carry him. </div><div><br /></div><div>So even though it's only September, life is red and green for us. </div><div><br /></div><div><br /></div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com5tag:blogger.com,1999:blog-2403865598460728065.post-45133677408799866372010-09-13T20:31:00.004-04:002010-09-13T20:50:38.561-04:00try, try again<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqdC2xy5P7L3du-fADfCBeCMpumwvy9ECCtD9GpyTnzwl5EpeJjtSBy8ilyRLMDw4Q-_Hme4fhPgzjR1LVHqYO38Zmpb5DiZi7VTNL8UJc5OCh7yUXnbsI_RCOg-JBpnxbY0o9HlZB_Rye/s1600/fallen_tree.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqdC2xy5P7L3du-fADfCBeCMpumwvy9ECCtD9GpyTnzwl5EpeJjtSBy8ilyRLMDw4Q-_Hme4fhPgzjR1LVHqYO38Zmpb5DiZi7VTNL8UJc5OCh7yUXnbsI_RCOg-JBpnxbY0o9HlZB_Rye/s200/fallen_tree.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5516564453020819666" /></a><br />So it continues. We were having the most wonderful Sunday. Martin made it through his first visit to a new Sunday School class for children ages 6 and 7. We went out for breakfast afterward. Martin ate lots of pancakes and was polite to the waitress who served us. In the afternoon, we took a long hike in a local park. Martin climbed fallen trees, found old bird feathers, and gathered some acorns. It was all so lovely.<div><br /></div><div>Then we went to our Sunday evening dinner group. And I must admit some of my own mistakes here. I was watching Martin's sister and also trying to eat, so I didn't always have my eyes on Martin. I noticed a few times that he was flustered about sharing some balls that he and other kids were kicking around the yard. I saw that the play was fairly rough and tumble. Martin took a whack in the face from another child. Then he delivered one in return. I took him aside for a time out, mostly hoping that he could cool down. Things didn't go as planned.</div><div><br /></div><div>Martin refused to sit down. He kept jumping up at me and flailing his arms. Hoping to get him away from other people, I took him to a small side room. There, things got worse. He started to kick me. I couldn't get him to sit in a chair for even a moment. He even spit at me, which was a new low. He was utterly out of control. Since my husband was at a meeting, I had to ask another man at the group to hold Martin for me. I couldn't manage him myself.</div><div><br /></div><div>Being held by someone other than a parent made Martin even more mad, or afraid, or something. I left the room, trying to figure out what to do. Within minutes, I decided that we should just go home immediately. I went back to the side room to get Martin and asked if he was ready to walk to the car. He said that he was, but he was still crying. He told me that he didn't want to be held, that he just wanted to go home. We did go home. I cleaned up his face. We ate some cereal together. And then he laid beside me in bed. Soon he started to hide under the covers, pretending to be in a chrysalis. He emerged as a butterfly, flapping his arms with a big smile on his face. For him, it was as if the events of the hour before hadn't happened. I, however, can't seem to forget that my kid spit on me.</div><div><br /></div><div>I used to think that we were working toward something called "better." But I'm beginning to think that such a notion is only a set-up for a letdown. Every success Martin has leads to more integration with the "normal" world. And most of his new encounters with "normal" have not gone well. I know we have to keep challenging Martin to try new things, otherwise he'll never progress. But this process sometimes makes me think that we're destined for intermittent and never-ending experiences of disaster. Every new encounter is a potential trauma for him, and therefore, for us. </div><div><br /></div><div>Some days I feel strong enough for it. Yesterday and today, I don't. </div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com7tag:blogger.com,1999:blog-2403865598460728065.post-73927562940448970512010-09-11T20:37:00.003-04:002010-09-11T20:47:24.730-04:00jekyll and hyde<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYwvx4q1P0Z-jglCQ4H-Tk924anIBWHDOmswjLaS_cUNzDcUPecz9KThBoWr6A3YGxmXEDPbBBzODQLiN3e1JTStEeRUuhLECZ9PxGO3QHZMIbs3cuVDZlPWrd3DEz0k09suN561bhlYvq/s1600/jekyll-and-hyde.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 155px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYwvx4q1P0Z-jglCQ4H-Tk924anIBWHDOmswjLaS_cUNzDcUPecz9KThBoWr6A3YGxmXEDPbBBzODQLiN3e1JTStEeRUuhLECZ9PxGO3QHZMIbs3cuVDZlPWrd3DEz0k09suN561bhlYvq/s200/jekyll-and-hyde.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5515821856524283602" /></a><br />Martin is really wonderful. Before falling asleep, he tells me that he plans to dream about boats. He pretends to enter a chrysalis and emerges as a butterfly. He reads books about the first ladies to his little sister. He tried a piece of lettuce last week.<div><br /></div><div>But then he is awful. Instantly awful. As far as I can tell, he becomes awful the moment I say the word "no." I've been hit, kicked, and screamed at. His teacher has also had to deal with hitting and kicking. He just turns on a dime and your left there, suddenly, being accosted by a 6-year-old.</div><div><br /></div><div>During the summer, we took a break from the behavior counselor that Martin was seeing. And when we returned home, we thought we might focus our concerns on Martin's eating issues by spending some time with a therapist who helps kids become more open to food. But I think we'll be heading back to behavior counselor. It's good that we can do that, but it's one more appointment to add to our week. It's one more thing to ask Martin to do instead of chilling at home reading president books and eating graham crackers. </div><div><br /></div><div>Despite the fact that this new appointment will stress out our schedules and keep Martin more busy than we'd like, we simply have to do it. He's clearly struggling - and failing - to keep it together when he feels challenged. So we start next week and hope for more Jekyll than Hyde.</div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com0tag:blogger.com,1999:blog-2403865598460728065.post-61569179535409147572010-09-04T08:18:00.003-04:002010-09-04T08:43:46.514-04:00green day<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8a3OwvhS-VEE9xEs_dQx6YO5dhwv96z4UtFR7Np5qVYDeXWj5hDgPHftWl0vDZ1lamP26YVQmphXbF51Lpkcun_PsaF9Iho0pSeuYvxOBe74OUFwvlB6pJjkPvVLupdbGG_PVibEfAuya/s1600/Fujiyama-006.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8a3OwvhS-VEE9xEs_dQx6YO5dhwv96z4UtFR7Np5qVYDeXWj5hDgPHftWl0vDZ1lamP26YVQmphXbF51Lpkcun_PsaF9Iho0pSeuYvxOBe74OUFwvlB6pJjkPvVLupdbGG_PVibEfAuya/s200/Fujiyama-006.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5513033579994354786" /></a><br />Things were bad. Martin spent several days in a total funk. He was excited to go to school, but acted out once he got there. He came several days in a row, reporting to us that he had a "red day." Martin's teacher uses color codes for discipline. Red is the worst. It means a student must write an apology note. <div><br /></div><div>After several red days and after Martin's terrible behavior at home, something changed. He slept about 12 hours one night. And his teacher - genius that she is - tried a new system of rewards with him. Ever since, he's come home reporting of his "green days," the very best you can have. He's been much nicer to us. Things are getting better.</div><div><br /></div><div>In other news, I think I've happened upon an awesome career for Martin: Japanese steak house (JSH) chef. On a recent visit to a JSH, I noticed that the chefs do the same thing and tell the same jokes over and over. It's a funny little routine, requires a certain skill set, and can be done successfully over and over again in exactly the same way. Perfect for autistics. Now, I'm not sure about the whole dealing with customers part of the job. But I thought about Martin having a life where he can do something relatively fun, amuse himself, and repeat ad naseum. Maybe? </div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com1tag:blogger.com,1999:blog-2403865598460728065.post-13920465194421503062010-08-31T20:22:00.003-04:002010-08-31T20:24:51.956-04:00ugI'm sad to report that I basically got beat up by Martin this evening. He was completely strung out after another day of throwing fits at school. He simply lost it when it was time to put on pajamas and go to bed. My arms are all red from where he hit me.<div><br /></div><div>I have no idea how to help Martin when he gets to this point. I try my best to make a world for him in which he never has to feel such desperation. But I'm not in control of everything, or really, anything.</div><div><br /></div><div><br /></div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com8tag:blogger.com,1999:blog-2403865598460728065.post-2266182385411572622010-08-29T02:30:00.004-04:002010-08-29T02:46:50.633-04:00wish<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5Sdbvelk3UhkWQwfsMZIjwrfGkwCpcDtorMz9Y-ttzcIYywLCF2nxugS7r7Q6yiF1Mnegg4xWShRz5S0k4VrT-zt1jT9EHCEYBVa3TlJcupdzcYwtZPi_nkb0FYL5nbyr2RB_UrBCK7P_/s1600/chocolate-cake-sliced.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 168px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5Sdbvelk3UhkWQwfsMZIjwrfGkwCpcDtorMz9Y-ttzcIYywLCF2nxugS7r7Q6yiF1Mnegg4xWShRz5S0k4VrT-zt1jT9EHCEYBVa3TlJcupdzcYwtZPi_nkb0FYL5nbyr2RB_UrBCK7P_/s200/chocolate-cake-sliced.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5510718840124597058" /></a><br />Martin has a hard time recognizing that other people have birthdays. Whenever we tell him about a celebration for someone else's big day, he insists that it is actually is birthday. In fact, when we told him that Christmas was a celebration of Jesus' birthday, Martin said that it wasn't Jesus' birthday at all. Instead, it was his. <div><br /></div><div>Yesterday was my birthday. I wanted, somehow, to help Martin in his process of recognizing other people and cooperating with them. I thought I'd try a project that Martin would ostensibly enjoy: making chocolate cake. My husband gave me the idea of radically simplifying the operation and making a list of what Martin should do. I measured everything into little bowls. Then I made a list that went something like this: Butter, oil, sugar, MIX. Eggs, vanilla, MIX, and so on.</div><div><br /></div><div>When I first invited Martin to make the cake with me, he insisted that he wanted to make a cake similar to one he makes on a computer game. I told him that our cake had many of the same ingredients and Martin seemed willing to try. He helped with every item on the list, including the sprinkling of chocolate chips on top at the end. He also licked the batter off the spatula, which is a perfectly normal thing that Martin usually refuses to try. When the timer went off, Martin jumped up and down at the prospect of eating the finished cake.</div><div><br /></div><div>We didn't make it through the whole day without Martin's insistence that it was actually his birthday. But we did move forward in our effort to help Martin learn to accommodate other people's wants and needs. I didn't have to make a wish when I blew out the candle on my cake. The cake was a sign that I'd already gotten it.<br /><br /></div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com2tag:blogger.com,1999:blog-2403865598460728065.post-67068895589825204272010-08-25T20:42:00.005-04:002010-08-26T07:13:30.027-04:00partners<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs7mesRlq-pierhFrsCagz5EKvVIHFzW8CnZS-9liA0J5wnYB_m1sYqe7k3ZGUfEwNnx6qK1LzpHaLaMSbqcnOVmb2O9nB5eMx3nPsaESDg3vIQdMOeQO8KgMMAv-WXMogvNHMfzVQVqE7/s1600/Stamp+Bert+and+Ernie.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 200px; height: 169px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs7mesRlq-pierhFrsCagz5EKvVIHFzW8CnZS-9liA0J5wnYB_m1sYqe7k3ZGUfEwNnx6qK1LzpHaLaMSbqcnOVmb2O9nB5eMx3nPsaESDg3vIQdMOeQO8KgMMAv-WXMogvNHMfzVQVqE7/s200/Stamp+Bert+and+Ernie.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5509515614880034034" /></a><br />Martin and his sister have a volatile relationship. Full of love, full of frustration, and sometimes full of physical conflict. If he is Bert (the paperclip-collecting puppet on Sesame Street), then she is Ernie (the puppet who makes goofy jokes and giggles). If they were the A-Team, she would be crazy Murdoch and he would be taciturn - and potentially explosive - B.A. Baracus. <div><br /></div><div>I've read that an autism diagnosis sometimes means that families stop having biological children. They worry about having another kid on the spectrum. They wonder if it's fair to the developmentally disabled kid they already have to bring another screaming, needy infant into the world. And they consider what it might be like for typical kids to grow up with siblings on the spectrum. For some people, it's enough to stop further babymaking.</div><div><br /></div><div>I found out I was pregnant with a second child just a week or two after Martin's diagnosis. Our entire experience with autism has run concurrent with expecting and then having another kid. For us, this has been an overwhelmingly positive experience. True, it's totally nuts at times. And sometimes Martin struggles to assert his way in a family that consists of not just his parents, but also another kid. Most of the time, however, it's been great for Martin to have a sibling. They talk to each other. They play together - sometimes. Martin's sister provides him with endless opportunities to practice the social skills that are so difficult for him. </div><div><br /></div><div>There's one aspect of their relationship that I didn't expect. Sasha's little-sister love of her brother makes her want to be just like him, autism and all. She is also obsessed with the presidents. She, too, will listen to us read a book about the First Ladies. This emulation won't last forever, but for right now, I think it's nice that Martin has someone around who thinks so highly of him.</div><div><br /></div><div>She teases him as mercilessly as Ernie teases Bert. And she drives Martin even crazier than Murdoch does B.A. But like both of those sets of characters, Martin and Sasha make a nice little team.</div><div><br /></div><div>PS - School is going well and Martin now knows the names of all the First Ladies. </div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com4tag:blogger.com,1999:blog-2403865598460728065.post-38247624700154486542010-08-22T21:08:00.004-04:002010-08-22T21:22:12.358-04:00first day<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZkRJRcI9tH4DQFNmTguzC-LN-iJNWb0ISAGhTmtrtm7hhG7pOzh-RGQZI_HfyRHbL0J9tPIqgl1K2jI3CCJ7uuS3lIlJ-j_pshA2OJWYjMxmORfQolihJFDfEd5MM4XSlDuXtbDZ0fPEc/s1600/kids-on-school-bus-IC5022-63.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 137px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZkRJRcI9tH4DQFNmTguzC-LN-iJNWb0ISAGhTmtrtm7hhG7pOzh-RGQZI_HfyRHbL0J9tPIqgl1K2jI3CCJ7uuS3lIlJ-j_pshA2OJWYjMxmORfQolihJFDfEd5MM4XSlDuXtbDZ0fPEc/s200/kids-on-school-bus-IC5022-63.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5508409063827436866" /></a><br />Monday is the first day of school. At 8:40, Martin will climb onto bus #13, new backpack and new lunchbox in hand. He'll ride a few blocks to school and greet his classmates and teachers, the same ones from last year. He'll be in the same class with the same routine. We're hopeful for a smooth transition.<div><br /></div><div>School is starting not a day too soon. Because we've been out of town so much of the summer, we had few structures in place for the last three weeks before school started. We've found a few babysitters here and there. We've taken a few trips to the zoo and the pool. But most of the time, we've been trying (and failing) to keep Martin occupied. Our summer experiences, both at home and in Virginia, have left me with a few resolutions for next summer.</div><div><br /></div><div>1) If our schedules allow it, we will leave town for a significant chuck of the summer. Going to Virginia was hugely positive for Martin. The change of pace, along with relaxed atmosphere, was just right for him.</div><div><br /></div><div>2) Whenever we're at home, we'll have some structures in place to keep Martin occupied. Whether it's sports camp at the Y or a babysitter willing to take him rollerskating, we won't try to do it all ourselves.</div><div><br /></div><div>3) More popsicles.</div><div><br /></div><div>4) We'll ask f0r more help. I think I could have bugged people more. I could have called them up and said that I was dropping Martin off for a few hours (along with a box of ice cream sandwiches, if that would help it go down easier). I have to remember that every time I have asked for help, I have gotten it. I just have to be willing to do it.</div><div><br /></div><div>In summary, I think what Martin and I need each summer is a country property with a popsicle dispenser and a few tents for our friends. Until that happens, we'll get on bus #13 every morning and hope for the best. </div>jen graberhttp://www.blogger.com/profile/10076101215607475480noreply@blogger.com1