Highschool butterflies
Hey, I am Rodger, and I have a daughter who will be starting her first year of high school next week! To all the parents who have been in my shoes, please tell me how you felt when your child was about to begin high school. I am just worried that the other students may not treat her fairly, and she may struggle to meet friends. How should I prepare her for this new journey in her life?? To those who can help, please respond!
--- Rodger
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My 2 angels
yesterday my son chewed his shirt in class....and I mean chewed...like holes and soaking wet...eeewww...the funny thing is he had put his shirt on backwards that day...(tag less) so now if I wash it he can still wear it the right way and it would be ok...LOL...he did this in class even though he was chewing gum! some days there is no stopping him...he has a "chewy" at home but I will not allow it at school....I go through more clothes that way! he is better than before but some days!
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Interview Needed
Hi, my name is Marianne Ortiz and I'm a young journalist looking for an individual that has autism. I am doing a piece on autism at school and I would like to see autism from a person that has it. I would prefer a teenager or a young adult, but what ever I can get will be grateful. I would like an over the phone interview or a webcam interview, but it all depends on the person. I am just trying to teach my classmates on this condition and what it is all about. Please someone answer me because this piece is very important to me and my grade. Just email me if you would like to know more.
Thank You, Marianne Ortiz
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Interview with Haley Moss -- Author, artist and teenager with HFA (Amazing young girl!)
When I see young kids with Autism or Asperger’s advocating for themselves, I get a sudden rush of excitement, followed quickly by an intense feeling of pride.
Although my children are not writing books, or getting interviewed by CNN, I do envision them some day being strong enough to tell their story, to share their experiences and to make a difference for the next generation of kids.
So, when I saw the new book, Middle School: The Stuff Nobody Tells You About, by 16 year old Haley Moss, I wanted to hear her story.
Turns out this young woman is nothing short of amazing.
She has not only become an author while still in high school, but is an incredible artist (she created all of the artwork for the book, including the cover). She is creative, has a great memory, can write poetry and says that she looks only at the positives of her Autism. Her mother told her about Autism by likening her ‘special talents’ to those of J.K. Rowling’s Harry Potter. And given Haley’s success, I’d say that the metaphor of her skills being ‘magical’ is fitting.
Haley comes across as a typical teenager, and even sounded like one during her CNN interview last April, when asked how her friends were taking her success, she responded with modest teenage charm, “Everyone is keeping it on the down low.”
Thankfully, she is here today to talk about her book which is aimed at explaining middle school to kids with autism, and their parents; from how to get through the classes, making friends, decoding texting acronyms and maybe most importantly (to me!), she even explains new slang, like “Down Low.”
So, if you have a child in middle school, entering middle school, or maybe you are like me and are already anticipating middle school with a certain sense of dread regardless of how far away it is; this is for you! Oh, and did I mention she is giving away a copy of her book? Oh, yes she is!
IMHO, U R in for a treat, and IIRC, many of U have kids the same age as Haley, so don’t say you’ll BRB, stay, read the interview and LOL with us! (Translation at the bottom of the page!)
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Hartley: Welcome to HLW3B Haley – I am so excited to have you here! Can you start by telling us about you and your family? (Specifically, my son would like to ask, do you have a dog?)
Haley: I am a sixteen-year-old girl with High Functioning Autism who lives in sunny South Florida. I go to a typical private high school and I am going to be a junior. I love to draw, read and write. I also have two standard poodles – you know, the big fluffy ones. One of them is white and his name is Thomas. He is 11 years old. My other one is black and his name is Zak. He is 3 years old and is known around the neighborhood as the “reindeer” because he thinks he could fly.
Hartley: Your book is great – a big CONGRATULATIONS on a job well done! The formatting is engaging with color, small illustrations and great added tips from other girls on the spectrum, plus the tips are both practical and reassuring. I am sure you weren’t aware of all of those things starting middle school, so when you think back, how did you feel then? Were you nervous? Excited?
Haley: I actually wasn’t nervous in middle school (sixth grade) because I was still at the same small school I had been at since the first grade. However, my transition to a larger school in seventh grade was a bit more nerve-racking. I had to learn everything. I went from 18 kids in my class to having 110. I also went from going between five classrooms in one building to navigating through a miniature college campus. Socially, I didn’t know a soul, and I didn’t know where to begin looking for friends. I was however, excited, because the school let you bring your computer everyday because lessons were online. I was really big on technology at school so I was excited.
Hartley: I like that your book covers everything – from the nuts and bolts of the schools physical layout to the intricacies of the word “boyfriend”. Which part was the hardest to write? Were you embarrassed or confused about any of it even at the time of writing it?
Haley: By the time I began writing the book, I was at the end of eighth grade. I was already a “survivor” and thought ‘Man, I have to help my fellow autism buddies. I hope they don’t have to go to three different schools and have the same friendship troubles that I had." I think the hardest thing to write was about friendship. Friendships were hard for me, and to relive the disappointment and loneliness I felt then was hard to document. It just hurt all over again. However, I do want to reiterate that high school does get better as people become more accepting of each other.
Hartley: The chapter on “New Slang” is hysterical to me. I actually just recommended your book to a girlfriend of mine who has a neurotypical daughter in middle school – laughingly telling her she could learn what her daughter was saying with your slang-guide. For those of us that are not as cool as we once were, translate some of the slang words for us – a few of the new ones for me are ‘Rents, Emo, and Glomp.
Haley: I included the slang section mainly to teach to my mom. She was just as confused as I was when the kids would come over and start saying some of these things. Now for a few quick definitions in context! How fun is that? ‘Rents is just “parents” but with kids trying to be cool by shortening it it to ‘rents, or if you’re me, ‘rentals. Emo was originally supposed to be short for ‘emotional’, but instead it turned into a social label and style of dress. Emo kids wear heavy black eyeliner, black clothing, and look kind of unkempt. It’s more like a mix of grunge and gothic. Glomps are tackle-hugs and someone usually ends up on the ground, but it is a loving gesture. For more on slang words, please check out the book! : )
Hartley: I appreciated the fact that you talk about difficult topics in your book like puberty, sexuality and dating. Those can be difficult topics for any teenager – but the social confusion for those on the spectrum can be even worse. What is your advice for girls that are not already ‘boy crazy’ when most middle school girls are? How do girls on the spectrum stay ‘cool’ when they aren’t interested in talking nonstop about boys?
Haley: The way I survived the ‘boy crazy’ girls was to just listen to them and nod when it seemed like a good time to nod. When the girls got tired of ranting about their crushes, boyfriends, and hot guys in magazines, they move onto a different topic, or then it is your turn to change the subject to something you want to talk about (preferably something you both in common). The Twilight Saga by Stephenie Meyer is always a great thing to talk about. It’s the most popular thing out there and every girl knows something about it. Even if you aren’t interested in vampire romances, read the first book anyway and see the movies. Or just see the movies so you can fit in with all of your peers. I’m not saying you have to become obsessed, or even like it. Just know the story and the characters so you could make small talk about the series with the other girls.
Hartley: I remember clearly how hard the social structure amongst girls is (Even though that was in the WAY distant past). Tell us your suggestions for how to determine what group of girls is the right social group for you? How do you know who to trust when many girls can be very into gossip at that age?
To read the rest of this article, and enter to win Haley's amazing new book, please visit www.hartleysboys.com
Thanks!
Hartley
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Parenting a High Schooler on the Spectrum: Interview and Giveaway with author and Autism Mom Claire LaZebnik
Since I don’t have any experience whatsoever with parenting teenagers, let alone teenagers on the spectrum, I had to find an expert that had survived the teenage years and lived to talk about it for my back to school series.
And I did just that. Meet Claire LaZebnik.
Claire co-authored the book, Growing Up on the Spectrum, with Dr. Lynn Kern Koegel and is proud to be an Autism Mom -- and is also giving away a copy of her book (Totally radical, dude...nevermind, that was cool when *I* was a teenager...not so much now....). So, who better to ask for tips to help parents that are just entering this new realm of life with their child than a woman who had done just that?
Since teenagers notably have a short attention span, let’s get right to the answers, shall we?
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Hartley: Hi Claire! Welcome to HLW3B – so happy to have you here! Tell me a little about yourself, your family and your son?
Claire: Thanks for inviting me. Let’s see . . . I’m the mother of four kids: the oldest has autism, the second oldest has Celiac Disease, the third (and only girl) has Addison’s and Hashimoto’s Disease and the youngest has so far dodged any diagnoses, but we’ll see what the future brings. In spite of all that, we’re a happy, silly, busy family and everyone’s doing great. My husband and I are both writers. He’s a co-executive producer on “The Simpsons” and I write books—mostly novels (my fourth one, IF YOU LIVED HERE, YOU’D BE HOME NOW comes out this September) but I’ve co-written two non-fiction books about autism with Dr. Lynn Kern Koegel who, with her husband, Dr. Robert Koegel, runs the Koegel Autism Clinic at the University of California, Santa Barbara. I originally met Lynn to consult with her about our oldest son, who was five or six at the time. I was blown away by the program she and her husband had developed: it all stems out of ABA (applied behavioral analysis) but they had spent time reviewing tapes of old clients to see how they’d progressed over the last decade or so, and used that knowledge to pinpoint certain “pivotal behaviors”—behaviors which, when appropriately addressed and improved, bring about even greater widespread improvement. Everything she suggested we do with our son made a huge difference. I’m happy to say that this kid—who was completely non-verbal at three and still mostly echolalic at six—is heading off to college this fall. It’s been a long journey.
One important thing I should stress right from the beginning here is that I’m a mom, not an expert. My job as co-author of our two books was to provide the parent’s perspective and to make the prose as user-friendly as possible. Of course, I’ve picked up some ideas from Dr. Koegel along the way, but I’m NOT a clinician!
If you want more specific, expert-reviewed advice, please check out our two collaborations, OVERCOMING AUTISM (aimed at parents of kids who’ve just been diagnosed up through elementary school) and GROWING UP ON THE SPECTRUM (for parents of kids in middle school through young adulthood). The latter also contains some first-person essays by my son, who talks about his own experiences of . . . well, growing up on the spectrum.
Finally, please know that while I’m very good at giving advice, I am by no means a perfect mother. A lot of good intentions fall by the wayside when you’re dealing with four kids with different needs, a house that’s always messy, several pets, and a writing career. I often don’t live up to the goals I’m describing. We’ve done a lot for our son and we’re thrilled with the adult he’s becoming, but I can also look back and wish we’d done more.
Hartley: As parents, we always think we could do more -- but to me, that is what defines us as being great! For the many parents out there who are anticipating the start of school already, what should they start doing now to help prepare their child on the spectrum for high school?
Claire: Any kind of priming—social, academic, spatial—is going to be useful. You should probably spend the most time on the area that your child needs the most support in. So if your child can hold his own academically but has had trouble making friends in the past, now’s the time to find out who’s going to be in his class next year and see if you can make some connections there. A mutual friend might come in handy to provide introductions and pave the way. If you have the economic means, you could think about throwing a party for some or all of the incoming class. Depending on the severity of your kid’s special needs, you could ask some peers to be helpers (letting them know what the issue is and asking them for their social support in the upcoming years—kids are often incredibly receptive to being directly asked for their help) or simply try to find a friend with a shared interest.
If your child is fairly social but has trouble keeping up in class, you might want to contact the school and get some of the class materials ahead of time so you can give him a solid grounding in them. For example, if your kid’s like mine, getting him to read some of the literary assignments for English ahead of time can really help, so he’s actually rereading them when he’s in class. That extra exposure might make a huge difference in his comprehension (and it wouldn’t hurt for you to read them too, so you can help him work it out when it’s quiz or essay-writing time).
If the school is much bigger than the one she’s been going to, you might want to get on campus ahead of time and walk around, exploring it and getting a sense of where everything is and talking through some of the choices and tasks she’s going to be dealing with during her days there.
We always found it useful to contact teachers ahead of time and just let them know that we were available to give support at home for any issues that might come up. If teachers know you’re willing to provide any necessary tutoring or priming yourself, they’re often not only willing but grateful to stay in touch during the school year, and you’ll know in advance if anything’s worrying them about your child’s academic performance—before he’s hopelessly behind.
Hartley: The communication between parent and teacher(s) is truly key to success in my book. Great advice! What about the nuts & bolts of high school -- like the practicality of a larger school, more kids, more classes, and more transitions? What kinds of things do you suggest parents ask for on their high schooler’s IEP to help them make the transition?
Claire: I have to be honest here and confess that it’s been a long time since I’ve had to deal with IEPs because my son switched to a private school in 6th grade. So I’m rusty on the whole thing—IEPs have their own language and code. But I can tell you some of the things you should think about requesting from the school in general.
One is accommodations on tests and quizzes. We stupidly didn’t ask for these, proud that our son was holding his head up academically (well, mostly holding it up) without them. Then we started thinking about college and discovered that you need to prove your kid’s been getting those accommodations in high school to request them on the standardized college tests. We had to scramble to request them for his senior year—and then wondered why we hadn’t done it before. He really could have used the extra processing time all along and the school was willing to keep it on an “as requested by the student” basis—if he wanted more time, he got it, but he wasn’t singled out in any way.
You might also want accommodations on the actual classwork or homework. If your child isn’t up to writing a long expository paper, the teacher might be willing to break the assignment down into short answer questions—or might at least agree to let you do it. That kind of thing. You want your child to be doing work that’s as close to what the other students are doing as possible, but with accommodations if he needs them.
Some other thoughts: you might want to see if the school’s willing to ask for recruits to help your child out during social times, like lunch or recess, eating with him and introducing him to others. Or if they’re open to starting a club that plays to your child’s strengths (a video game club maybe?) Many high schools are willing to host a club so long as you can get a faculty member or parent to be in charge of it, so you might be able to get something going that will show your child to his best advantage and improve his social status.
Hartley: Love the idea of starting a club! I once read that all a child needs is ONE friend to make them feel socially successful -- and a club sounds like the perfect place to find someone with similar interests. High school marks many big social milestones, and one of the biggest is certainly getting a driver’s license. What is your advice for managing the process of getting the license and the inevitable challenges of increased freedom that comes with having a license?
Claire: In all honesty, if you can throw money at this problem, then do. (Sorry, but there it is.) We hired someone who had worked with kids on the spectrum before and came highly recommended by some parents we knew. He was wildly expensive and insisted on many many hours of on the road time. He said that kids with autism need to be exposed to as many alternate scenarios as possible, since they have so much trouble generalizing. Our son logged a LOT of miles and had done practice tests several times before taking his real test—and because of that, he passed the first time! Of course, if you can’t afford to hire someone for that many hours, then I think you have to be prepared to put the time in yourself. There’s nothing more important than safety.
I’ve heard you can get a sticker for your child’s license that says something about his having autism. It’s not a bad idea. Police have famously assumed the worst about teenagers or young adults on the spectrum, so if there’s a good chance your child might say or do the wrong thing if pulled over, something official explaining their situation could really help
I’ve always felt that cell phones are the greatest invention of the modern world for parents. We will often tell our teenage sons that they have to check in with us by a certain time when they’re out. If they don’t, we let them know we’re not pleased and that if it happens again, we’re going to cut back on the freedom we allow them. But they’re pretty good about it, because they know we’re pretty easy-going about the rules so long as they’re in touch with us.
Hartley: Private driving teacher -- GENIUS! And now that they are driving, what about dates? High school marks the time when dating becomes the norm. When your child is on the spectrum, how does this make things harder? What is your advice for the moms out there trying to help guide their child through the dating world?
Claire: Honestly, I wish I had all the answers for this one. It’s hard out there for a kid who’s a little different but who wants to be dating. Is there anything more subtle and less clearcut than flirting? It’s not something you can teach your kid or prime him for. So there’s no question that kids on the spectrum are at a huge disadvantage when it comes to romance.
As always with social things, you want to encourage your child to meet people with similar interests. There are social groups out there for teens on the spectrum and those can really help. Teaching your son or daughter to be polite, pleasant, well-mannered and to practice good hygiene is important. In GROWING UP ON THE SPECTRUM, we have a whole chapter devoted to various romantic success stories of people we know who are on the spectrum, and the lessons we’ve learned from these stories. (the book covers some of these topics in much greater depth—feel free to take it out of your local library.)
Hartley: Peer pressure. That term strikes fear in the heart of every parent, but specifically those of us who have a child who is so readily willing to do what they are told to by their friends. I am especially scared of this. What is the best way to discuss peer pressure with our kids?
Claire: As frequently as possible! My son hates when I suggest that friends could lead him astray. He’s very literal so as far as he’s concerned, a “friend,” by definition, is someone who would never harm you in any way. But of course peer pressure only works when you actually care about the good opinion of the person pressuring you—a friend can pressure you, a stranger can’t.
We’ve worked hard to instill certain core beliefs in all our kids—drugs are dangerous, driving under the influence is deadly, and you should never break the law—and the corollary to all that is that if a friend tries to persuade you otherwise, you shouldn’t trust that friend. The advantage to kids on the spectrum is that they can be good rule followers. The problem is that we’re always pushing them to be more social, and early on I committed the sin of saying, “play like the other kids,” something I regretted when he was older and I wanted to teach him the opposite lesson of “don’t do what the other kids are doing just because they’re doing it”! Learn from my mistake: teach your child to trust his own instincts rather than to imitate peers who might be untrustworthy.
One thing that’s really helped us is that our son does have a couple of adults he’s willing to confide in (our brother-in-law and a therapist who’s seen Andrew for over 15 years). We know that they’ll always steer him in the right direction and encourage him to talk to them about any sticky situations. If you can find someone like that, someone whom you and your child trust equally, that’s huge. Teenagers aren’t crazy about coming to their parents about problems, but they will talk to other adults who they think are cooler than their parents (and who isn’t?).
Hartley: I recently have started noticing the value of a 'mentor' in my son's life. I originally thought that just having an active father would be fine, but I see now how a 'cool' older brother or uncle would come in seriously handy! Making friends is hard for kids like mine, and I worry that my son will become friends with anyone that will have him – and ultimately that may be the absolutely wrong group of kids. How can we as parents help guide our children’s friendships?
Claire: Yeah, that’s a tricky one. I do think (although maybe I’m wrong about this) that because kids with autism tend to be less social than other kids, that actually allows us parents to have a little more control over their friendships. If you’re the one suggesting your child get on the phone, call someone, and make plans (and are prompting him all along the way), you can probably push him toward a kid you like as opposed to a kid you DON’T like. I’ve also found that (and please don’t tell my kids this) simply being more available to DRIVE when the plan is with a kid you like than with a kid you don’t can do a lot toward steering your child in the right direction! (Literally, I guess.)
I do suggest you really think about what you don’t like about any particular kid. If he genuinely seems destructive in some way, you have to do everything in your power to keep your kid away from him. But if he just seems mildly annoying to you—not the kind of kid you’d pick out yourself, but not evil either—then think about the possibility that maybe the friendship works for your kid on some level.
I fretted a lot about my son’s choice of friends in middle school, because he was often attracted to the loud, boastful, obnoxious types, and the beginning of high school was rocky socially (he started off with a group of kids who later rejected him) but in the end he found a couple of really great friends, boys we liked and trusted and whom he stayed friends with all the way through. In the end, his instincts were right—which I keep reminding myself about as he heads off to live at college!
Hartley: College? Gulp. : ) Any last piece of advice for those Autism parents getting ready to embark on this new – and very scary – part of life with their child?
Sometimes you just have to close your eyes, say “go ahead,” and hope for the best. You can’t hover and protect your child every second anymore. Those days are gone. It’s scary. Your kid is walking off a cliff and there will be bruising and injuries. But the goal is to give her the confidence to move out into the world without you, and she can’t do that if you never let go.
On the other hand . . . Dr. Koegel and I are great believers in “stealth” parenting. You need to fade back, but you don’t need to disappear. A certain amount of controlling the things you can control (staying in touch with teachers, hiring the best driving instructors, visiting school and watching your child from a distance to see how he’s doing, etc.) is valuable. You want your child to succeed as much as possible, which doesn’t mean you cut off opportunities, just that you manipulate those opportunities to the best of your abilities.
Hartley: Thank you Claire for taking the time to be here today! I am inspired by those women who have walked this path before me, just like you!
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To enter for your chance to win a copy of Claire's book or to find other information, resources and inspiration go to www.hartleysboys.com
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Navigating Difficult IEP Meetings, interview with Jeff Cohen
While looking for an expert to speak with about IEP Meetings, I happened upon the book Guns A’Blazing: How Parents of Children on the Autism Spectrum and Schools Can Work Together – Without a Shot Being Fired, by Jeffrey Cohen. I immediately liked the title, because most families I talk with do attend meetings with their ‘guns’ (at least in their holster) – and few are able to actually leave them at home.
So I looked up the author, Jeffrey Cohen, to learn a little more about him, and here’s what his Amazon page said, “Jeffrey Cohen started life as poor street urchin, orphaned and taken in by a gang of pickpockets led by an older man named Fagin. No, wait. That's someone else, entirely.”
And I laughed out loud. Really hard. Which was just refreshing, because you know what, this parenting a special needs kid is HARD – and you all know my motto: If you can’t laugh at my life, you have no sense of humor.
Between the book and the bio, I was hooked. This was my expert.
Luckily for me, Jeff was able to make time in his busy schedule – turns out he is a successful freelance writer, screenwriter, teacher and author of the Aaron Tucker mystery series, which features a character that has Aspergers Syndrome, and the current Night of the Living Deed under the name E.J. Copperman (more info and links below -- check them out!). He has written articles for The New York Times, Entertainment Weekly, USA Weekend, Writer’s Digest, Parenting and may other publications, not to mention having his work developed by Jim Henson Productions and CBS, among others.
After reading his book, Guns A’Blazin’, it is easy to see why he is so successful – the book is an engaging and enjoyable read, full of good information and useful examples. He addresses the real issues, while trying to maintain a sense of perspective, and as you might guess from his Amazon bio, has a great wit and charm to the way he writes, which is underscored by a little sarcasm – a definite plus for me when it comes to reading (yet another) book on autism. Finding a book that is different, funny and a true ‘page turner’ in a world of dry texts is, without sounding too corny, refreshing. And as you probably already guessed (am I getting predictable?), you can win your very own copy here on HLW3B! Look for details at the end of the interview.
Jeff has agreed to answer the hard IEP questions – those about advocates, bad school IEP meetings and more. This is definitely an interview that you will want to save – bookmark this page so you can come back to it when school starts. Although I am hoping you won't need it.
Alright partners, holster your weapons, and saddle up for a good time, the rodeo’s startin’! Yee Haw!
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Hartley: Hi Jeff! Thank you so much for being here today and sharing your knowledge on IEP meetings. When you wrote this book your son Josh, who has Asperger’s Syndrome, was in high school. Tell us about your family now? How is your son Josh?
Jeff: Josh is just fine. He’ll turn 21 in August (!), and will complete his sophomore year of college shortly thereafter. He lives in an apartment on campus, has a few friends, and is devoting himself to his work as a film/video major. He’s currently looking for a six-month co-op position in the film business to fulfill a college requirement, and is interested in editing and writing, so if anybody out there knows of anything, don’t be shy.
Hartley: IEP meetings are stressful, plain and simple. We go in with a huge chip on our shoulder as parents, and I am sure teachers and administrators come in with preconceived notions of us too – probably based on the hundreds of other “Autism Parents” who came before us. How should parents prepare for their child’s IEP meeting so that we don’t come across as overbearing nutcases, but still like we mean business and expect good things for our child?
Jeff: First, it’s helpful to know the school personnel before the first IEP meeting. Ask to meet the principal, the teacher, the special education teacher (who is required to be there whether your child is an inclusive class or not), the school psychologist and, if you can, the speech and language expert. Get a feel for how well they “get” your child. And yes, you should listen to other parents who have horror stories, so you can be prepared, but don’t expect that your school will be one of the difficult ones; it’s quite probable you won’t have the same problems as people you talk to. Keep in mind that the possibility exists that parents with horror stories really are expecting more than they should, or have issues different from yours.
Hartley: For many families, there is already animosity and mistrust between themselves and the school, often created from years of miscommunication – it would be fair to say they have ‘gotten off on the wrong foot’, and some feel as though there is no way to mend that broken relationship. What would you suggest these parents do come fall when they are in yet another IEP Meeting? How can they begin to mend the relationship with their child’s team without giving up what they believe is necessary for their child?
Jeff: One of the things I most strongly advocate is empathy—you have to get into the mindset of the people you’re talking to at IEP meetings. What is it like for them to have your child in class every day? Now don’t get me wrong—I’m not suggesting for one second you apologize for your child’s ASD. But I am saying that if you understand how your child affects the teacher’s day, and the principal’s, and so on, you can address their issues as you address your child’s. Start with the assumption that the school personnel have the same goal as you do: to help your child level the playing field. And let them prove you wrong, or be pleasantly surprised.
Hartley: I truly believe, much like what you write about in your book, that schools do want to do what is right for the child, but the challenge is that those stories aren’t talked about – no one is out there bragging about what their school does for their kid on blogs or forums because those families aren’t looking for help. Mostly you find parents, desperate for help, publically ranting about the injustices their child is suffering. I have heard my fair share of what you call “Horror Stories” ranging from the simple, “My child has to do PE and hates it” to the more complex, “My son was told to sit in the middle of his Kindergarten classroom while all of the children, one at a time, by direction of his teacher, told him why they hated him.” And much worse. How should parents handle real problems – from small ones to big ones?
Jeff: There are often very real problems in the classroom, and more often in the schoolyard during recess or gym. I am no apologist for school systems or teachers who aren’t interested in helping students with ASDs. Some of them are awful, and that’s the fact. But most teachers I’ve spoken to and heard about really want to find a way to help the child—if for no other reason, because it will make the teacher’s day easier. When there is a problem, start with communication. Start with the person involved. When my son was in primary school, maybe first grade, he said his phys ed teacher “hated” him and “yelled” at him “all the time.” We went in to talk to the teacher. Turned out her concern was that Josh—who was just learning to tie his shoes—always had laces undone when the class was running around, and she was concerned he’d trip, and would repeatedly have to stop him and get him to tie his shoes. We got him a pair of Velcro shoes, the problem was solved, and that teacher was his strongest advocate until the day he left that school.
Hartley: Many people seek outside help when their relationship with their school starts to deteriorate. Often families hire an educational consultant or request a volunteer advocate to help them ask the right questions; create the best goals or accommodations, or to help get the right information during an IEP meeting. It is a hard road to travel, as I have found that just the mention of ‘bringing someone in for an outside opinion’ seems to have the school district hiding behind legal terms. Have you used either of those supports? What kind of help can they provide?
Jeff: We never had to use consultants or legal advocates; of course, it helped that my wife is an attorney who boned up on disability law in our state before we went to any IEP meeting. But I know parents who have paid consultants and advocates, and in some cases, attorneys, with varying degrees of success. Yes, sometimes a school system gets its back up at the suggestion of “hired guns” coming in to advocate for the child. But it’s completely within your legal rights to bring anyone you like to the meeting. I think if you feel that you’ve been intimidated or unsuccessful in your solo attempts to help, you might want to look into using a consultant. But find one someone you trust can recommend.
Hartley: You say in your book that breaking the ice with a bit of humor was one of the best things you did during your IEP meetings, and I absolutely agree! What are some good ice breakers that we can use with our child’s school that will help ease the tension, and remove those ‘chips’ from everyone’s shoulders?
Jeff: At the first IEP meeting my wife and I attended, I opened by looking the assembled group in the eyes (which wasn’t easy, because that encompassed about 10 eyes) and saying, “I know my son can be a pain in the butt.” And everybody relaxed. If you go in with an attitude that says, “I know you’re going to try and stop me from getting what I need (which is something I’ve heard parents say), you’re asking for resistance from the school personnel. First of all, you don’t need anything here; your child needs the help. Look for ways you can help him/her together. Ask the representatives at the meeting what your role should be. Ask for their suggestions and offer some of your own. Don’t demand. Don’t gnash your teeth. Don’t show your claws. That’s not going to help.
Bring donuts or bagels. Make comments that suggest you’re looking at things from the school’s point of view as well as your own. And above all, never lose sight of what you’re trying to do—help your child, not score petty points in a perceived battle between yourself and the mean people at the school.
Hartley: And lastly, tell us about your novels -- it is always great to read something for entertainment not just education!
Jeff: Here they are:
1. The Aaron Tucker Mystery series (AS DOG IS MY WITNESS) features a work-at-home dad who writes about crime stories for local publications. He has a son with Asperger's, and in the book pictured, investigates a murder for which a young man with Asperger's has been arrested--and for which he confessed.
2. The Double Feature Mystery series (SOME LIKE IT HOT-BUTTERED, IT HAPPENED ONE KNIFE, A NIGHT AT THE OPERATION): Elliot Freed owns Comedy Tonight, an all-comedy movie theatre where he shows one classic and one contemporary every day. He deals with his ex-wife (for whom he still carries a serious torch), his teenaged staff, his parents and the occasional murder.
3. The Haunted Guesthouse Mystery series, by "E.J. Copperman": Alison Kerby has moved back to her Jersey Shore hometown after a divorce, so she can renovate and run a guesthouse and keep a roof over her head and that of her nine-year-old daughter. When she discovers the place is haunted, she has a problem--the ghosts won't let her finish her renovations until she finds out who murdered them.
Hartley: Thank you Jeff for taking the time to talk with us – and answer real questions that real families like mine struggle with each year! The IEP process is difficult, draining, emotionally charged and even downright scary at times and we all need guidance – and a little humor too.
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Go to www.hartleysboys.com to enter to win!
Here is how you can win:
You will need to follow this blog publicly through Google located on the top of the right column or via RSS/email (please indicate in your comment which one you use) and
2. Post your best IEP advice or feel free to ask other questions too!
3. Leave your email address so I can contact you.
OK, once you have joined and commented, you are officially entered.
The contest will run from Monday 8/09/10 to Monday 8/15/10 and will end at 7pm PST. The winner will be selected by random drawing and emailed (don't forget to leave your email address!!). If you do not respond, a new winner will be drawn.
Good luck!
H
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Autism and Private Schools
My oldest son, Julian (6), got accepted at St. Anthony's School today. After many nightmarish months battling the public school system, I was just done. He is such a brilliant child, I just want more for him than IEP meetings where nothing ever gets accomplished and an environment where he is not intellectually stimulated. I decided to see if a private school would even accept him....what did I have to lose? It's not like they can take away my birthday or anything...all they could say was "No".
So, I gave this school a call and told them that I had a first-grader that I would like to enroll. I did NOT tell them that Julian is autistic. The whole process could have ended right there. I wanted them to see a very smart little boy before they attach any labels to him. An interview/tour of the school was set up. I made sure to tell them how smart Julian is.
The secretary could hear Julian in the background. He was on the computer navigating Google Earth. He had zoned in on the tallest building in the world which he found on YouTube. The secretary told me that she was going to have the school principal contact me. He called 20 minutes later and Julian was still talking about this building. The principal stated that he himself would like to talk to Julian and would that be okay....
I spent a week as a nervous wreck and finally, showtime arrived this morning. I was prepared to fight but the whole interview went way better than I could have imagined. The pricipal knew right away that Julian is autistic yet high-functioning and he was blown away by Julian. He personally invited Julian to attend first grade! I almost started to cry but I was able to control myself.
I asked the principal why he felt that Julian would thrive at this school. After all, this will be the third school Julian has gone to and he is starting first grade! This school is very strict as most catholic schools are, and the boys and girls wear uniforms. There is no lunchroom, the kids eat at their desks. The principal knows much about Autism and i was told that all of these factors will significantly help Julian. He was very positive and optimistic and so was the rest of the staff. They can't wait to have Julian come to school....insatnt support system here.
I am so proud of Julian I could burst. He conducted himself so well throughout the whole process and he amazed everybody. He walked right over to the globe of the earth in his new classroom and showed us where Finland is, what the weather is like and that the Finnish soldiers fought on skis during World War II. Everybody's jaw dropped...it was awesome. The principal looked at me and stated, "This is an extremely bright little boy you have....we are so pleased that you want to enroll him."
All I have to say is GO JULIAN!!!
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a school for children with autism needs your vote on facebook
Hello All! we are a school for children with autism currently in a contest on Facebook put on by Kohl's Cares for Kids. The top 20 schools to get the most votes will win $500,000 each. We will use the finds to build a special needs playground for our kids. These kids already have so many obstacles in life that having this playground that is tailored to their needs would help them to enjoy playtime which helps them grow and learn from their environment. To vote go to http://bit.ly/d0XvKT" target=_blank>http://bit.ly/d0XvKT</FONT></A> Enter our name; Shema Kolainu. and vote 5 times please. It will only take a minute. If you are interested in volunteering to help us get more votes from your facebook friends, that would be awesome. We are up against high schools with hundreds of teens on facebook all day long, our kids are on the severe end of the spectrum and they are not on Facebook, so it is up to us adults to step up for them. Thank you. Shema Kolainu - Hear Our Voices. for more info on us http://www.hear-our-voices.org">www.hear-our-voices.org</A></SPAN></SPAN></SPAN></STRONG></P>
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Created a new group, please come join
Hi everyone, I am not new to AutSpot, but been pretty quiet as my son's life needs so much management. I have created a new group in hopes to band together on this issue. Child does well in school, but not in the community.
Structure of school yields positive results, however the Community is a different story.
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Autism in Early Childhood Course from the Autism Outreach Project
Autism in Early Childhood (Preschool)
This course will present information related to working with
children with autism spectrum disorder (ASD) from three to five years of
age, especially within the context of preschool. A portion of the
session will be dedicated to evaluation and diagnosis of autism with a
specific focus on description of social communication abilities.
Children who are emerging verbal through conversational skills will be
a primary focus. The remainder of the course will be dedicated to
description of common communicative characteristics observed in children
during this age and presentation of strategies to help facilitate
social communication development and peer interactions.
Presenter:
Jim Mancini, M.S., CCC-SLP, is a speech-language pathologist with over
ten years of experience working with children with autism and their
families. Currently splitting time between Seattle Children's Hospital
and private practice, Jim previously worked at Baltimore's Kennedy
Krieger Institute, Center for Autism and Related Disorders. He conducts
evaluations, provides treatment and co-created a parent education
series designed for families who have recently received an ASD
diagnosis.
Date: Thursday, November 18, 2010
Time: 8:30 a.m. to 3:30 p.m.
Course No.: 16759
Clock Hours: 6 clock hours available $17
Registration Fees: Parents of children with autism spectrum disorders $15
Professionals $90
Participating Locations: This course will be presented at the NWESD, 1601 R Avenue, Anacortes, and is available statewide to other ESDs and school districts via K-20 videoconferencing.
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Smooth Transitions
http://3.bp.blogspot.com/-QZ4H4hNAzw8/TV8oQz88U9I/AAAAAAAAAFQ/LBBVOnMFz9g/s1600/author+picture+100.jpg" imageanchor="1">  http://3.bp.blogspot.com/-QZ4H4hNAzw8/TV8oQz88U9I/AAAAAAAAAFQ/LBBVOnMFz9g/s320/author+picture+100.jpg" width=251 height=320 j6="true">Autistic and Asperger's children often soar notches above strong-willed, can be highly argumentative, and just plain oppositional at times. There's also the mother of all undesired behavior, the meltdown. In my experience, the meltdown is the ultimate communicator of "No!" or better yet, "I'm afraid!" or "It hurts!" Therapy and age will help mellow these reactions, but autistic toddlers have no other way to communicate with us. Meltdowns are powerful, leaving grieved, distraught parents in their wake and when they rear their ugly heads, nothing can be done but to ride out the storm. Making sure toddlers don't hurt themselves is about the best thing that can be done. Well, except for being a very observant parent. This can help predict when those storms are brewing and, unlike the weather, give you hints to prevent them in the first place.
Toddler autists can 'go, go, go' until they drop and be completely unaware of hunger or need of sleep. And, sometimes, out of the blue, his favorite video or beloved toy can all of a sudden cause meltdown. At our house, though, nothing seemed to cause meltdowns as often as 'transitions.' Transitioning is moving from one activity to another, one location to another, intoducing a new plaything, or new level of play or another person. Anytime an autist is expected to stop an engaging activity or leave his comfort zone, you have the elements for meltdown. One way to reduce those transitional meltdowns is by using a timer to warn the child of an upcoming transition. Announcing a trip to the park, grocery store, doctor, or a visit from Grandma in ' x' amount of time while physically setting a timer will work well for some. Tell him of your plans matter-of-factly and kindly, but not high with emotion. Your excitement to go to the park will not be shared by a toddler who is engrossed with the lineup of his dinosaurs. Now, don't think that you're going to give this toddler a 10 minute warning and everything will be okay. No, you have to work up to that. You can determine the warning time by the severity of the meltdown. For example, if going to the grocery store irreversably obliterates your child's world, tell your child 2 hours in advance and set a timer. Remind your child at 1 hour, then every 20 minutes until those last 10 minutes. Count those down by each minute. If there are multiple issues, take that into consideration. For example, if your child hates to leave home, cannot tolerate clothing, has a fear of being without her favorite food, and cannot function without her stack of books, you'll need to address each trigger in your warning. Try laying out her clothes where she can see them, but don't dress her yet. Instead, explain to her that "in 2 hours, she is getting dressed to go to the store." Fill a baggie with her favorite snack and explain that you are taking that to the store also. Grab a backpack and tell her, "Before we go to the store, we will put your books in this bag and take it with us." Never argue with your autist. Just state the facts sweetly but firmly and don't waver. If she gets upset, just ignore her ( as long as she is safe.) Let her know you love her, but this is what the schedule is. This is the hard part of establishing a routine, but it will get easier. When the timer goes off, you and your child must absolutely walk out the door. Do the very same routine for every trip or transition that you need to make. It won't take long and she will show signs that the routine is very beneficial. She will gain a great sense of predictability and control in her life, even as a young toddler, and you will see those meltdowns decrease. Don't forget, you use the timer to get to your destination and to get back home again. So, once you're at the park (for example), go ahead and announce that in 2 hours you will be leaving. Remind your child at the 1 hour mark and then every 10 to 20 minutes. At the designated time, you must absolutely leave. Do not talk about it or argue about it, simply stick to the timer. Be sure to do this at the grocery store too. Announce that in one hour you'll be heading to the check out stand and count those minutes down as it gets closer. You'll be amazed at how well this works when you stick to the routine. If your toddler is 2, you will need to actually use the sound of a timer going off, if you have a 4 year old, you may be able to just voice the time. One thing that remains the same though, is that this takes planning, organization and will power. If your parenting style is a whole lot more lax and your rules seem to get blown around in the wind, the timer method may not work so well for you. But, it's not the only trick in the bag. Another strategy is reading social stories to your child. Books about going places you go and what children do in those places help him know what to expect and how to act. Reading social stories about holidays, doctor visits, going to the store and visits from family memebers can all be helpful. Don't ever assume that because your child is non-verbal, that he cannot read or understand what is taking place. Many autists and Asperger's children are bright way beyond their peers and can comprehend and understand things you didn't think possible. It is not uncommon for them to be unusually early readers. In fact, pictures, words, sentences and reading hours each day to your very young autist can have an immense impact and be most therapeutical. One last idea about transitions. If your child is really struggling, why not have a whole lot less transitioning? One year, my husband had to do all our shopping because I could not get our autist to leave the house. Going anywhere was sheer misery for her. Clothes were unbearable, and being in the store was just too much for her little mind and body to take in. So, she and I just stayed home that year. When our little girl emerged from her Winter, she was able to dress and go places once again. We realized how much we had achieved by staying home that year when we had a wonderful, storm-free Summer. It's not about forcing toddler or preschool autists to function in our world, many times we just need to hunker down in their world until they are ready to come out. Annie Eskeldson writes for families of young autists. She started using a timer with a 4 hour warning because of many levels to hurricane force meltdowns. She is now able to breeze in and breeze out with 10 minute warnings. Annie Eskeldson has 2 published childrens's books for families coping with autism. Visit http://www.authorannie.com/"><FONT color=#aa0033> http://www.authorannie.com/</FONT></A> where Ashi tells our story of autism.
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Gluten in School Supplies
Today was our very first day of Kindergarten. Our Molly, though very high functioning, has her share of atypical behaviors. I dropped her off this morning to a class of 20 other students and just ONE very nice, very capable (I'm sure) leader of the pack.
As I left the room and retraced my steps down those halls, I couldn't help but shake my head. No tears. Definately fears! Does this teacher really know what she has gotten herself into. Driving through the pick-up lanes, I saw her teacher spot me through my front windshield. She starts strutting toward my car with a completely blank face. I nervously turn down my tunes and brace myself for a bad report. I roll down the window and she smiles and says, " Well, Molly had a pretty good day. She fell asleep twice during the day, but we'll work on it. She did good."
I thanked her cordially and pulled ahead to pick up my sweet little Rosie-Pie, standing there so big and so brave in front of her elementary school with her back back that looks more like it's wearing her. She got through the first day of school.
And she did good!! This just may work. ;o)
I just thought I would share my blog post from this week on Autism Spot becasue I posted the exact letter I gave to Molly's teacher regarding her school supplies. She was completely receptive, and even aske dme some great questions. Hope this may help some of you with your GFCF journey back to the classroom.
http://www.autismspot.com/blog/Gluten-FREE-gluten-filled-classroom">http://www.autismspot.com/blog/Gluten-FREE-gluten-filled-classroom</a><br><br>Happy Schooling to all the parents out there!
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DJ Dance Party (Winter 2011)
Here is a little story I wrote about Haydn's first school dance...
It's Friday night and we are getting ready for "DJ Night" at Haydn's school. When one has a child with an Autism Spectrum Disorder, pragmatic language disorder, sensory processing issues (hearing in particular), and basically no clue how to react in a charged social environment, what is the best plan for Friday night? Take him to a dance party in the school gym, of course.
Haydn is a member of a new autism education program in our school district. He receives all his therapies (speech, physical, o.t., social skills, etc) in class with the other kids on the spectrum and he has been mainstreamed (with an aide) into general ed. music, art, gym, lunch, and recess. He is doing very well according to his teachers, and has allegedly made some "friends" in these classes.
I put friends in quotes because I have not met any of these kids, and I have seen him with critters his age before. He's not much for the conversation game yet. So I often wonder what type of relationships, if any, he has with these kids. When I ask him who his friends are, I usually get:
"DaniellaBriannaRyanMottyAunchMichaelEmilyAllegraGrace"
I'm sorry, did I hear an AUNCH in there?
I recognize the names of a few of these kids, but the others could be anyone. For all I know, he could be referring to some multi-headed creature they keep locked in the janitor's closet and feed left-over meatloaf.
I know that he spends quite a bit of time with the general ed. students, but, "DaniellaBriannaRyanMottyAunchMichaelEmilyAllegraGrace," is all I'm getting right now, and it just doesn't tell me much. So I am hoping a few of these kids show up tonight, so I can see Haydn interact with them, and maybe meet a parent or two.
Haydn is bouncing around the apartment, full throttle and ready to roll, but Mommy and I are not quite ready yet. In an attempt to buy a few more minutes, I ask him to get some clean clothes for the dance. Pick out some good “DJ Dance Party Clothes.” He runs into his room and grabs tonight's ensemble: Spiderman shirt, camouflage pants, brown sock, white sock. In about eleven seconds he gets dressed, puts on his jacket and runs downstairs to the door.
"OK, Mama! OK, Daddy-o! I'm ready for the DJ Dance Party!"
"Let's go! It's time for the DJ Dance Party! Yes it is!""
We arrive fifteen minutes early, so he can check out the school and get acclimated to his surroundings. The primary concerns for the evening are the noise, any flashing lights they may have set up, and the hyped-up mass of kids. I don't want him to get over-stimmed and spin himself into the ground, or flap his way through the ceiling. The good thing about it being a dance party, is that most of his Stiminy Cricket stimmed-out behavior looks a little like dancing. I think it would be hilarious if he could turn this party into a spectrum "Soul Train," and get the whole gym spinning and flapping to the beat.
I also want him to see the gym being used for something other than gym class or assemblies. He needs to be constantly reminded of the flexible nature of his reality. No room, person, or place has a singular definition or use. Variety and change are critical. This lesson needs to be hammered into his skull, never to be forgotten.
Haydn is pretty fired up to be in school at night, and wants to show Mommy and me all of his classrooms. The kid has about ten teachers - this could take all night
"Hey Daddy-o, I think I need to check Miss Pikel's classroom."
"Not right now kiddo, I need to pay for your ticket."
"My DJ Dance Party ticket? OK. I think it's time to check Miss Pikel's room."
"Don't worry about that right now."
"OK, Daddy-o. I think I need to go potty."
"Sounds good - let's do it."
We enter the bathroom. HIS bathroom.
"Hey Daddy-o, the soap is on the left of my sink. It has a cup under it. They fixed the lights in my bathroom. Yes they did. I am going to go in my stall."
"OK, Haydn."
He comes out of the stall, pants up but a little twisted, washes his hands, and dries them on my shirt.
One of the many little jobs for Daddy-o in Haydn's World
"Do NOT touch my black light-switch Daddy-o. The lights stay ON in my school bathroom."
"Alright Haydn. I'll try to resist."
The muffled thump of dance music is forcing it's way into the hallway. We have one more little piece of business to attend to, then we can enter.
"Haydn. I have a glow bracelet that you are supposed to wear when you go into the gym."
"Not the boy. The boy does not need a bracelet. No."
"Fair enough. Will you hold it, and show it to the lady at the door?"
"OK Daddy-o. Let's go to the DJ Dance Party."
Haydn waves the bracelet over his head as we walk into the gym and the wall of sound stops him dead in his tracks. He stands on the black out-of-bounds line of the basketball court... clutching the glow bracelet in his hands at his waist, and starts looking around. I am standing behind him and I can't see the look on his face, but he is not flapping his hands or covering his ears, which is a very good sign.
Mommy and I take a few steps back and let him check out the room on his own.
The lights are dimmed, and there is a deejay set up under the basketball net on the right side of the gym with flashing colored lights (stim-stimmy), and a giant speaker on either side of his console (could be problematic). Under the left basket are several tables with bottles of water, snacks, and extra seating. The rest of the basketball court is a maelstrom of spinning, twirling, leaping, and screaming kids - all trying to out-dance, out-jump, and basically out-crazy, one another.
All, except one. One little blue-eyed boy who is standing ramrod straight like a palace guard, two steps INSIDE the black line now - watching everything.
I walk over to take a quick check on my little soldier.
"How's it going kiddo? You know can jump around and do anything you want at the dance party."
"I'm OK, Daddy-o, you can get out of here." And he pushes me off the dance floor.
That's a good enough answer for me. He is quietly inching his way closer to the other kids, at his own pace, in his own time. I have seen Haydn like this before. He is determined to make this work, and he wants to do it on his own.
One of the things that amazes me, is that he still has not put his hands over his ears. Not one time. Lady friggin' Gaga is smacking his ear drums around, and he has not made one attempt to block it out. He continues to work his way towards center court, and two boys stop their chase-me-dance game for a second and say hello to him. He doesn't say anything, but looks at them and smiles, they smile back at him and run off. Friends! Haydn watches them leave, then quietly resumes the palace watch.
I sneak over to check on him once again, and he gives me his glow bracelet and pushes me off the court again. As I walk off the dance floor, I look down at what Haydn has just handed me. It is a bracelet in name only. Haydn has crushed, pinched, and twisted it into knots, all the glow juice squished into one end. Poor thing never had a chance.
He has not shown any outward signs yet, but I guess it would be safe to say that he is dealing with some stress...
I cram the bracelet carcass into my pocket as a friend of mine walks over. She is here with her children and working as a chaperone. She shows me her kids and I point to Haydn.
"That's my little man in the red shirt..."
"Oh, I know Haydn. I love that kid so much. Your son is my favorite kid in the whole school."
Apparently she worked with him in pre-school last year. She tells me how much she loves him, and all the great things he does at school, and how much fun she had working with him last year. A couple of minutes later his lunch aide comes over and starts giving me a Haydn update. She tells me he loves to eat with the rest of the kids, and he eats everything they put on his plate...
Not much of that going on at home, but that's another story for another day
While I've been listening in on the February meeting of the Haydn Fan Club, Haydn has made his way into the shallows of the crowd (hands locked in front, still standing at attention - ears still uncovered), and the deejay starts playing the "Chicken Dance." Haydn loves funny noises, and as soon as the song starts playing, he starts laughing. Mommy tries to get him dancing, but he's too busy laughing. The two of them have a blast and he only gets a move or two down, but is a failure to learn the "Chicken Dance" really such a terrible thing?
Luckily, (I hope you can feel the sarcasm intended here) it's time for the YMCA. The horns start wailing, the drums start thumping, and another generation falls victim to the hypnotic spell of the Village People. Mommy tries to teach Haydn the moves, and he starts doing a little Y, a little M, not so much C and A. While he and Mommy are YM-ing, the mother of one of his friends walks up to me.
She introduces herself and informs me that her son and the kids in the class really like Haydn. She says that her son told her that when Haydn come into the class it "gets more fun."
So he IS making friends. He may be a little different than they are, but since they are meeting him at at such a young age - Haydn will always be Haydn to them. They have accepted him for who he is. Since it is my feeling that the socializing of Haydn and the development of his social skills are THE MOST IMPORTANT GOALS to accomplish in school, this is like a straight A's report card to me. The academics come easy enough to him. I just want to get him out there with his peers - let him fail, let him succeed, it doesn't matter, just give him an opportunity to at least TRY to hang out with the rest of the kids. That's when the real learning happens.
My moment of inner Daddy-o happiness is interrupted by the deejay's booming voice:
"I want all the kids to get into lines by grade!"
Kindergarten in front, second row is first grade, and so on. I guess it's time for some kind of "slide" dance. boogie woogie woogie...
As the kids scramble to their spots, Haydn stands guard right smack in the middle of the dance floor and looks around the gym. He seems to be a little lost. I walk over, intending to lead him to the front of the deejay booth, and I hear...
"Haydn, come on up here with us."
"Come on Haydn, the kindergarten kids have to be up here. You can stay with us."
Three little girls reach out, take him by the hands, and bring him into the front line of kids. I walk away (before I get pushed), and look over my shoulder at my smiling son and his friends. He stays with the girls for the whole song, does none of the dance moves the deejay instructs him to do, but jumps up and down a little and never stops smiling. The kids all groove together until the song is over, then scatter. Haydn backs it up a little, and resumes his post in the middle of the dance floor.
Haydn spends the next hour jumping and dancing amongst the kids. Mommy joins him for the participation-type dances and teaches him the moves, then he retreats for another shift at the palace gates. He stays right in the middle of everyone, NEVER puts his hands on his ears, and NEVER leaves the dance floor. He does not look odd, or weird, just a little militant from time to time.
The deejay keeps the party going, each grade gets a snack break, and Haydn has stayed longer than I ever imagined he could. After the last snack break, mister deejay decides to split up the gym and have a little "We Will Rock You" singing contest. Haydn loves Queen, so I expect this to be fun. The kids are supposed to clap and stomp to the beat and sing the chorus. It is going to get loud, so Mommy and I both stay close. The song kicks in - STOMP STOMP CLAP... STOMP STOMP CLAP... "Buddy you're a boy, make a big noise..."
"Hey Daddy-o. I hear Freddie singing."
"That's right Haydn."
"Where's Brian?" Brian May, Queen's guitarist - in case you didn't know
"The guitars are coming. Listen closely towards the end."
The gym is getting louder and louder. Haydn is enduring, but that's about it. He looks pretty frazzled, but still holding it together. The guitar rips in at the end of the song and he flashes a weary smile at me.
"There's Brian, Daddy-o."
The song ends, the shouting is over.
Then mister deejay decides to try it one more time.
Good stuff, thanks for nothing mister deejay
STOMP STOMP CLAP... STOMP STOMP CLAP... "Buddy you're a boy, make a big noise..."
Unfortunately, a thirty second guitar solo is not going to save us this time. I can see the first of the tears, peeking out of the corners of Haydn's eyes. Mommy and I make the move.
We sneak in, and lead him out of the line. He is crying, and looks totally wiped out. It's like the entire effort and weight of the evening has finally caved in on him. We want to get to a spot where he can have a little privacy. We kneel together in a corner, and I offer him a solution.
"Haydn, would you like to go to the bathroom so we can calm down a little. Turn those tears off."
"The kids were shouting Daddy-o. They were VERY loud."
"I know Haydn. Would you like to get out of here for a minute?"
"The kids were VERY loud."
"It's OK, Haydn. They were bugging my ears too. Do you want to take a break?"
"No Daddy-o. I want to stay right here." What can I say, the kid's a beast...
"OK, Haydn. Let's turn those tears off."
He grabs my thumbs and starts squeezing. The palms of his hands are soaking wet. I realize what he has been doing all night, why he has been standing guard on the dance floor. He has had his hands locked up in front of him so he would not flap them, stim with them, or cover his ears.
He takes a deep breath in and blows it out. Another one in, another one out. "Blowing up the Balloon." He calms himself a little, and he turns off the tears. He looks over my head at the rest of the kids and let's go of my hands.
"OK, Daddy-o. I'm alright. Yes I am."
Mommy gives him a little kiss, and he runs back to his post on the dance floor. It took the length of one song. He is exhausted, but not ready to give up the party yet. We are coming into the home stretch, about fifteen minutes to go. Haydn is back out with the rest of the kids, bopping and guarding his way to the finish line. The party is almost over, and mister deejay announces that he has received a lot of requests for a song from a rather popular teenage pop star.
Having said that, he promptly serves up a steaming pile of Bieber for the kids to digest, and...
Haydn runs across the dance floor to Mommy and me.
"OK, Mama. OK, Daddy-o. I'm ready to go now."
We grab our coats and walk to the door. A couple of his friends run over before we leave, and say goodbye. He smiles at them and (with a little prompt) says goodbye back to them.
We put on our coats and walk out of the gym. As we are walking, I reflect back on the evening for a moment. Haydn did a remarkable job tonight. His will-power and determination, the incredible inner strength he possesses, carried him through an extremely challenging situation. The intense sensory barrage of dance music, kids screaming, flashing cameras, pulsing deejay lights, twirling glow sticks, did not diminish his resolve, could not defeat him, would not make him give up and leave the dance party.
In the end, it was really only one thing that drove Haydn out of the gym...
One thing that put an end to the DJ Dance Party...
One thing more powerful than all of the sensory challenges and difficulties of the evening...
One thing even more powerful than the autism spectrum...
That one thing was...
One crappy Justin Bieber song.
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The Track Meet (winter 2011)
Another adventure from last winter:
I decide that Haydn and I are going to go to an indoor track meet.
That's right, I said "indoor track meet" - High "echo-ey" ceilings, fluorescent lighting buzzing overhead, the cacophony of chattering teenage runners, screaming coaches, the glorious organized chaos that IS indoor track. I am going to take my five year old son - perhaps you've heard of him - the little guy with Asperger Syndrome and sensory processing disorder (supersonic-sensitive hearing, among other things) into this maelstrom of noise and excitement.
The two of us drive to the field house and park the car. There are school buses everywhere. Big yellow school buses. EVERYWHERE...
"Hey Daddy-o. That's a great big yellow school bus!"
"I see it Haydn."
"My school bus is little."
"I know Haydn, just keep walking please."
"My school bus is yellow like that great big one!"
"Thank you for sharing that with me buddy."
"The buddy rides a little yellow bus to Berkeley School."
"Oh does he?"
"That is a great big yellow bus. Yes it is."
"So it is."
Seems to have a certain fascination with the obvious
"I like my little bus Daddy-o. Yes I do. I like my little bus. I don't ride a great big bus."
"I like your bus too. Time to change the subject. Let's talk about something else."
"OK, Daddy-o. Do YOU like those great big yellow buses?"
"Haydn, enough about the buses please."
"It's OK, Daddy-o. You don't have to be mad."
"I'm not mad. I just don't want to talk about the buses anymore."
"Does the track meet room have lights like the Old Gym?"
And the lights make their first appearance of the evening...
We walk into the field house, and my very excited, slightly over-stimmed little partner heads right over to the maintenance closet.
"Hey Daddy-o, is that the janitors closet?"
"Looks like it."
"I can't go in there. No I can't."
"Great. Then why did you run over there."
"It's OK, Daddy-o. You don't have to be mad."
We walk down the hall and around the corner, and BAM!! Haydn stops dead in his tracks. This is going to be hard room. The field house has a high, arched ceiling, and coaches and athletes scattered all over the infield. They are running the sprints - hurdles on one side of the track and the 55 meter dash on the other. That means a gun is firing about every minute or so, one right after the other. I forgot about the damn guns...
Kids are stretching and jogging, all the while talk, talk, talking. There are cheering parents, screaming coaches, all the ingredients necessary to make for a delightfully overloaded, sensory experience. When Haydn encounters a hard room, as we call it, he likes to slowly work his way in, checking out his surroundings and scanning for "friendlies."
"Friendlies" are fans, lights, bathrooms, a familiar face, anything that he can focus on while he gets himself acclimated to the room. He finds something he likes, we talk about it a little, and move on with our day. This is a coping mechanism that he has developed over time and it is very effective. As long as we are patient, Haydn can handle just about any situation.
"Hey Daddy-o, I think those are fluorescent lights in the chandeliers up there."
Our old friends the lights, always there when we need them
"Why do you say that Haydn?"
"Because they look like fluorescent lights." Right...
BANG!!!
Haydn almost jumps out of his skin, starts talking a little faster.
"Hey Daddy-o, there are two bathrooms over there. The boys room is on the left and the girls room is on the right. I use the bathroom on the left and the girls use the one on the right."
BANG!!! This gun is going to be a problem
Another big flinch, with a hop, jump, and a little hand flap. Haydn balls his hands up into fists.
"Hey Daddy-o. Do they have bleachers here?"
"They used to."
"Hey Daddy-o, I didn't cover my ears! I am very brave today."
"I am very proud of you Haydn. You know, if you don't like this place, we can come back next week and try again."
BANG!!!
Flinching, Haydn looks straight ahead and says:
"I think I better go in the track meet room and find Tyler."
"OK, let's do it."
We walk across the track, and Haydn has my arm in a vise grip... head tilted to the right to cover one ear, the left hand cocked and ready to cover the left ear. I scan the infield for Tyler, hoping to get this madness over with quickly...
"I see Tyler."
Off he goes. Running through the crowd of stretching teens, Haydn barrels towards his cousin.
BANG!!!
He jumps in the air, head tilted for ear protection, never breaking stride, until he plows straight into the middle of Tyler's team. Most of the kids are stretching and warming up, and Haydn settles right in the middle and starts doing his own version of warm-ups. Everything the big kids do, he tries to do. He tries to touch his toes. He sits on the floor and grabs his feet. One girl lifts up her right leg and grabs the foot to stretch out the quads, so Haydn bends over, grabs his right leg...
And does a face plant right into her gym bag.
"Whoa. I wiped out!"
"Are you alright big guy."
"Yes, I'm OK. I'm not a guy. I'm a boy."
BANG!!!!
A little air under those feet, no hands on the ears this time.
I spend a few minutes talking to Tyler while Haydn flirts with the girls.
"Excuse me girl, do you like the Old Gym?"
Aspie Suave´...
"Yeah, I guess it's OK."
"I love the Old Gym. Yes I do. There are square lights in the Old Gym. I like the lights in the Old Gym. Yes I do."
"I can see that. I guess they are pretty nice lights."
BANG!!!!
A little less jumpy, no hands on the ears, head straight-ish. The guns are fading into the background. I learn that Tyler's race is going to be in about three hours, so Haydn and I are going to need to find something to do.
"Hey, Daddy-o. I think I need to go potty."
Well that's something to do...
"OK, let's go. Say goodbye to everybody."
He never knows how to end a conversation. He usually just flies away.
"Goodbye everybody. See you later Tyler. See you later track meet girls."
Unfortunately, in order to get to the bathroom, we have to cross the track near the finish line. Right next to where Mister Starter Gun has been methodically blasting Haydn's ears and disrupting our evening.
Haydn does not see him, so I try to hurry him toward the track crossing. Every other minute of every other day, Haydn moves at 100 miles per hour, buzzing around and dragging me along for the ride. Now that I need him to pick up the pace, he shuffles along slowly to the scorers table and starts a conversation with one of the meet officials.
"Hey. Excuse me. Do you like your black track meet notebook? I think I like those track meet lights."
BANG!!!!
We are too close.
The shot seems to rip right through Haydn's ears. The blue of his eyes flatten out and his hands lock up over his ears. I can see tears gathering at the corners of his eyes, the bottom lip slipping out.
I need to get him to a private place so he can calm down. I want him to be out of sight, so he does not get embarrassed. He has a terrible reaction when a room, or something in the room surprises him. He does not like to fail, and I think he gets embarrassed when he loses control. It's almost as strong a feeling as the sensory shock that usually causes the problem in the first place. He is a very resilient little guy and just puts his head down and plows into the situation at hand whenever possible, but unfortunately that aggressive attitude sets him up for a big old sensory backhand upside the head from time to time. It does not happen often, but when it does, he will go fetal on the floor with his hands over his ears. He withdraws into himself, and it is not easy to pull him back out.
I scoop him up and carry him across the track. He is terrified, his head ringing from the gun shot, he has his head buried in my shoulder. I can feel the tears wetting my shirt, and his grip is getting tighter around my neck. I see a staircase by the bathroom. It appears to be a little darker and a little quieter than the rest of the room, so I decide to duck into the shadows and see if we can pull this thing back together.
We sit on the stairs, Haydn on my lap, his head buried in my chest. I notice that he is soaked with sweat. The back of his neck, his lower back, his hair. The track meet has been so intense that it has actually taken a physical toll. He is starting to shake and I can feel the weight of every person, every sound, in the room pouring out with each of his breaths.
"Haydn. Is there anything I can do to make this better."
He doesn't say anything, but grabs my hands and places them on his back, one on the lower back, and one on his shoulder blades. He is very deliberate in their placement. I squeeze him a little tighter and I can feel the hitch in his breathing release a little.
"Let's try to calm ourselves a little. Let's breathe, and try to turn off the sad switch."
Haydn visualizes his moods (anger and frustration - the temper switch, sadness - the sad switch, etc.) as switches, and he tries to turn them on and off when he needs to.
"Would you like to try blowing up the balloon Haydn?"
"Yes. I think we should blow up the balloon Daddy-o."
Big breath in, blow it out. Do it again. And again. Blow up the balloon.
He starts to get himself under control. I can feel the tension in his body releasing.
He gets off of my lap looks right at me. Ten minutes and he already has that sparkle back in his eyes.
"I think I need to go potty." Back to the original task
"OK, let's do it, kiddo."
"The kiddo needs the bathroom Daddy-o."
"Of course he does."
We walk into the bathroom, make a quick dryer assessment (looks like paper towels), and he ducks into a stall to do his business. I close the door to give him privacy.
"Hey Daddy-o, that boy is making poopy!"
"Excuse me?"
"The boy next to me is making poopy."
"Haydn, I don't think he needs you to tell everyone. Move it along, we need to get out of here."
I peek in the door, and Haydn is doing some sort of bathroom stall yoga, taking a leak all over the side of the toilet while standing on one foot and peeking under the wall of the stall. Real good for the core and overall balance...
Fighting the laughter, I try to muster up something resembling an authoritative Daddy voice (with the middle name thrown in for dramatic effect):
"Haydn Michael, what are you doing in here?"
"It's OK, Daddy-o. You don't have to be mad."
I decide to cut him some slack. He just worked a real hard room, took a sensory beat-down, and still managed to get himself back on track. Pretty impressive for a five year old. I am very proud of my little guy. Can't let a little bathroom yoga derail a pretty significant achievement. In fact, I think a stop at Carvel for some ice cream may be in order.
He walks out of the stall and I twist his pants around for him. (he can't ever seem to get his pants back to the way they were pre-potty) I look up and see kids everywhere. There is a line of kids waiting to get into the stalls. Lines at each urinal, lines at the sinks. The room is reaching maximum capacity. We need to wash our hands and get out of this place.
We wash our hands at the sink and as we dry them, I feel so proud of Haydn that I feel that it is time to make a big-time Daddy speech and spell it out for him. In the most crowded bathroom in New Jersey. Brilliant.
"Haydn I am very proud of you. You did a great job at the track meet today. I know it was hard, but you were very brave and very tough today. You are getting very good at beating these hard rooms."
Then my amazing little boy... My Aspie Warrior... The light of my life... My inspiration to try to be the best Daddy and best person I can, looks up at me with sparkling blue eyes...
And turns off all the lights in the bathroom.
"Haydn!"
"It's OK Daddy-o. You don't have to be mad."
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