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  1. By Ellen Raede (Danny's mom) Raising a son with Asperger's, we often had to celebrate in a different way. Here are three examples: 1) When Danny turned 12, we were on vacation in Seattle. To celebrate his actual birthday, Danny didn't want a party or special dinner, but instead requested a tour of Microsoft Headquarters. Fortunately, we had a business acquaintance whose son coordinated a fabulous tour of the campus. I really didn't understand all of the technical terms or descriptions of software – but Danny did! He was focused, happy, thrilled, and social doing something that he wanted to do. 2) Danny was raised Jewish, and that meant we celebrated his Bar Mitzvah at age 13. To prepare, he studied for months to learn to read Hebrew, learned some prayers, and wrote a speech about the meaning of his Torah portion. (A lot for any 13-year-old!) On his Bar Mitzvah day, he lead services, and then we had a celebration. We had just had the diagnosis of Asperger's, so I had a little better idea of what we should NOT do to celebrate. We shouldn't invite too many people. We shouldn't make too much of a fuss of him. We shouldn't celebrate with loud music. This was not the normal celebration of our community, but it was perfect for Danny. At the party celebrating him becoming part of the adult-community, instead of having lots of loud screaming teenagers dancing “YMCA,” we had a magician performing. Instead of expecting Danny to participate in any games, he was the judge. And, instead of him arriving into the room with full fan-fare, he sat on his Dad's lap watching close-up magic. 3) High School Graduation Day was perfect for Danny. My husband and I dreaded the thought of Danny having to sit through a few hours of speeches and a long line of students waiting to get their diploma. So, when Danny said he really didn't want to go through with the graduation ceremony, we were a bit relieved. But, we knew the importance of celebrating milestones, so we asked Danny for some alternative ideas. What he came up with was spectacular. On the day of everyone else's graduation ceremony, we drove the 1 ½ hours to Los Angeles, had dinner at an Italian restaurant where “picky-eater” Danny could be assured of finding something he'd like on the menu, and made our way to an outdoor venue to attend a symphonic concert featuring the music of video games called “Video Games Live.” Although my husband and I felt like we were in a foreign culture in unfamiliar territory, we were elated to see Danny very comfortable and happy and singing or humming along to every song. Celebrations are important but we quickly learned that we had to do things Danny's way. And, we had fun too!
  2. One of the hardest decisions I had to make as a parent of a child with Aspergers was what to tell people when they met him. Should I let them form their own opinions of James perhaps wondering about his lack of eye contact, but charmed by his incredible vocabulary, and a little confused by his volatile anger all on their own? Or should I interject my pat phrase, “James has Aspergers, which is high-functioning autism. He’s very intelligent, but he has emotional problems.” It seemed prudent to tell his teachers and tutors what to expect from him. I wanted them to be sensitive to his moods, to be empathetic with his frustrations. I wanted them to understand that he was on an IEP, that he needed help with writing, hated loud noises, and often wanted to play alone. But should I tell his friends? Or rather, should I tell his friends’ mothers? For little boys ages five or six did not really care if James wanted to keep his coat on inside because it makes him feel safe. But the friend’s mother who struggled to get him to take off a wet raincoat before walking on her newly-refinished floors, probably should have been warned. Because James was a “borderline case,” and I didn’t want him to be labeled, I did not tell his soccer coach. I thought I was doing the right thing. I hoped that James would be just another kid on the team, that he would learn cooperation and group skills along with passing the ball and guarding the net. But in the first game, James became frustrated that he couldn’t run as fast as the other children. He wasn’t able to keep up with the fast pace of the game and wanted to quit. I remember my husband yelling at him from the sidelines, the edge in his voice as he screamed, “Get tough!” But my son never got tough. Fifteen years later, he still hates soccer, he’s still afraid of loud sounds, he still wears his jacket 24/7. In fact, he wore it into the doctor’s office last week, only taking it off when the nurse had to take his blood pressure. He winced as the cuff tightened, and he rubbed his arm angrily when she took it off. I’m sure she wondered why he talked so loud as he described his symptoms, and I know she grew frustrated as he droned on and on. When the doctor came in, and James flinched and fussed as she palpated his glands, I finally intervened. “He has Asperger’s,” I said. “He’s extra-sensitive to touch.” I watched as the news registered on her face, as she stepped back and then tried again with a gentler touch and a more-patient manner. I know that James should have told her himself. We’ve talked about the term, “self-advocate.” He knows what it means, and he believes that it’s necessary. But I know that tomorrow, when he interviews for that part time job stocking shelves, he won’t disclose that he has Aspergers. He says that he doesn’t want any special treatment. And as much as I admire him for that determination, I know I will wonder if it’s my fault when he says that he wants to quit in a month or two. I will certainly feel guilty when I wish he were “tougher,” and I will hug my husband tighter that night as we wonder what’s next for our son.
  3. I was in Los Angeles last weekend, walking around DTLA and people watching and observed something I had seen thousands of times over the years: Parents telling their kids what to do. Not in the sense of "Throw away your trash" or "Come here", but things like "You need to trust me" and "Calm down". It occurred to me that the most effective parents, the ones that have a deep relationship with their child, and the ones that ultimately raise physically & emotionally healthy children that go on to lead independent, successful & fulfilling lives, all have 1 trait in common. They don't use declarations to shape their relationship with their child. They use demonstrations. It's one thing to constantly declare that you can be trusted, you should be respected, or you are an authority. It's another thing entirely to demonstrate that you can be trusted, you are respectable and you are knowledgeable. The parents that we see in our work that are effective are the ones that take time to say all they need to say through their actions, not their words. It's often the little things that send these messages through demonstrations. When your child wants to share something with you, do you brush it off? Are you genuinely interested? How do you model dealing with your own stress, fear and insecurities? The way you show up in the world demonstrates to your child what is important, and, in turn, how they fit into the world.
  4. I sometimes feel like dealing with people with Asperger's is like playing Dungeons & Dragons as a Gnome Wizard and then stumbling into a non-magic zone. "Haha! Your tricks won't work here!" The "normal" tactics that we reach for as a society tend not to work well with folks on the spectrum. In other words: people with Asperger's tend to not respond well to force. I was on a train last night coming back from Los Angeles and the guy behind me was talking about his experiences in military school, and all I could think of was that if someone came up and started yelling at me and telling me what to do, I'd either just laugh at their attempt to control and intimidate me, or shut down and curl up into a fetal ball (depending on how stressed I am that day). What DOES work is helping them get out of Defense Mode. Validating their emotions, holding space for them, and communicating in a softer, gentler way. It's important to remember that folks on the spectrum are usually REALLY overwhelmed already, and so the best thing you can do is make them less stressed, not more. So ask yourself "What is causing them stress, and whats the best way to remove that stress?" and then start from there. That being said, all humans need some stressors, and having them hide in their room all day and avoid the world isn't product either (and actually causes them more stress). So it's a fine line and a fine balance between the two things. So here's my question to you: What do you to to try to find that balance? I'd love to hear from you in the comments.
  5. Here's how to help your kids deal with their anger issues.
  6. Here's 3 different and easy to use tools that you can use to know if your kid is happy and doing well, or struggling and masking.
  7. All of our routines are being disrupted in some way right now. Even if you live in the basement and just play video games all day, we're all being affected. So how do you build a new routine and create some certainty in your life when every day is different? Here's some ideas: First, recognize that above all else, establishing a routine is more about having a sense of certainty than it is keeping an exact schedule. It's about knowing what to expect, and having a sense of familiarity with the outcome of each day. This sense of familiarity is on a spectrum, which means that too much familiarity leads to boredom and dullness (thats why people go on vacations and do new things in general). Since we can recognize that there is a spectrum of certainty, instead of focusing on building a minute-by-minute schedule to adhere to, focus on building in more certainty into your life. Maybe you should cook the same thing for lunch every day for the next week. Maybe you set an alarm to wake up at a certain time, so that your day always starts the same way. Again, building a routine is less about adhering to a schedule and more about creating a certain amount of certainty and knowledge of what to expect in your life. And since, in the outside world, what to expect is changing minute by minute, you'll need to make your own personal home life more certain and regular. Stay safe, wash your hands, and we'll talk soon.
  8. until
    Join us for our upcoming Deep Into Defense Mode Live workshop where you'll learn all you need to know on getting out of Defense Mode, building trust, and increasing motivation in yourself & others (family, friends, etc). This event will be held in Pasadena, CA (roughly 30 min drive from Los Angeles International Airport with minimal traffic). AN UPDATE: Hello, In light of the recent outbreak of Coronavirus and per the recommendation of the California Dept of Health, we have made the decision to move our upcoming DIDM Live Los Angeles event to an online format. That means that it will no longer be held in Pasadena, CA. Instead, it will be held over a group video chat, using Zoom. We understand this isn't the ideal situation, and we want to express our sincere regret to the many families and individuals who were looking forward to attending this event in-person. We will do all we can to help make this online workshop an incredible, educational, and life-changing experience for you and your family. Here’s how this will work: 3 days before the event, we will email you a Zoom link that you can use to join. Please test the link out beforehand to make sure the software works on your computer. If you have any questions or tech problems at all, email danny@aspergerexperts.com and he will help you get it sorted out. On the morning of Saturday March 21st at 9 AM Pacific Time, we will all meet together, face to face via video chat. From there, we will participate in the workshop just like we would in a face to face meeting. The regular schedule will still hold, and we will still be available during the lunch time for 1-on-1 coaching and questions. After the workshop concludes, we’ll send you a full recording of the event (something we weren’t able to do before!), so that you can re-watch as many times as you’d like. To make up for any inconvenience caused by this change of format, we will also be giving you free, complimentary tickets to an upcoming live event of your choice (NOTE: more Asperger Experts events will be scheduled and announced once the outbreak of Coronavirus has passed). You’ll receive a number of complimentary tickets equal to the amount you have purchased for this event. That way you’ll get to attend two AE workshops for the price of one- one online event and another live, in-person event in the future! These free workshop tickets never expire, so you can use them whenever it works best for you. Again, this isn’t what any of us were hoping for, and we want to express our sincere regret to the many families and individuals who were looking forward to attending this event in-person. Our first and greatest concern is for the health and wellbeing of our community, including you and your family. For this reason we feel it is wise to limit in-person attendance at the Deep Into Defense Mode workshop this month. That said, we certainly look forward to meeting you in-person at a future AE event! We are also very excited to spend two days together during this upcoming online workshop - answering your questions and getting to know you better. Thank you for your patience and understanding.If you have any questions, concerns or just need to talk, just reply to this email or email us at help@aspergerexperts.com Thanks and talk soon, The AE Team
  9. “James has autism,” I typed the next day. I was sending an email to our family and friends. I couldn’t imagine talking to them all, saying the words again and again on the phone. I knew some people would be mad that I was putting such big news in an email, but I also knew that some people would be relieved that I wasn’t telling them face-to-face. “The psychiatrist at Dayton Children’s diagnosed him, and we will, of course, seek a second opinion, but it looks like the diagnosis is correct. He also has Attention Deficit Disorder and Oppositional Behavior Defiance Disorder. But the main diagnosis is autism. I know that one day we will be the “Poster Parents” for Autism, and we will raise money and awareness and do walks …. but right now we are devastated,” I wrote. Then I hit send. I walked out into the living room. “Well, I did it,” I said to Sean. “Did what?” “I told everyone. I sent a mass email. Your family and mine.” “Okay,” Sean answered. “What did you say?” I told him, and Sean winced. “What?” I asked. “You don’t think I should have told them all of that?” “I don’t think you should have said we’ll be poster parents,” he said, with a laugh. “Now we have to live up to it.” The next day, when Sean came home from work, he came and sat by me. I looked up from my computer. “Did we get a lot of emails back?” he asked, glancing at the screen. “Yeah, everyone’s been really nice. Lots of “I’m so sorry,” or “We’re thinking about you.” I stood up and pushed the chair in with a bang. “So what’s wrong?” Sean asked. “I don’t know. None of them have said what I really wanted to hear, I guess.” “Which is?” “That it isn’t true.“ “Kristina.” Sean put his arm around me. “No, it’s fine. I’m alright.” Sean sighed. “You wrote my sisters?” “Yeah. They said they’re surprised. Becca said, ‘But he’s so smart!’ and added about 50 exclamation points.” “Ha!” Sean said. “Sounds like her.” A lot of people gave us suggestions of doctors to contact -- and diets to try. Good Lord, you should read all the advice about diets. ‘No dairy! No red dye’” “Well, what did you say back?” Sean asked. “Mostly, I just wrote what I thought that they wanted to hear.” “Like what?” “Oh, we’ve never thought about that! We’ll try that! Yes, yes, it’s good to finally have a diagnosis. Yes, I remember our second cousin’s step son who has it and yes, I know he did just fine in life.” I got up. “Jack? He’s weird.” Sean said. “I know.” I answered. I turned out the light to the study. “I also told everyone we are okay,” I said. “Are we?” Sean asked, as he walked down the hall. “No,” I answered.
  10. Time moved slowly in our house. Everyone else’s children grew up quickly, became dentists and lawyers, and most of all, best friends as siblings often do, later in life. Our lives were different. We moved forward in small increments, too often unnoticed, too often unfelt. And our goals were more simple -- get James through sixth grade, be able to go out to dinner as a family without being asked to leave because the kids had a screaming match at the ice cream bar. . . Once Emma asked me why James was so mean to her. “He is always mad at me,” she complained once, as I was driving her to her Polliwog swim lesson. “I love him, but he doesn’t love me.” I was stunned at how succinctly she had put it. I didn’t think I would have to tell her so soon, when she was only four years old. I thought I would have years before I would break the news to her gently, preferably with a psychologist and her father in the room, with lots of hugs and tears and gentleness. But, I took a deep breath and decided to try to explain Asperger’s Syndrome to her. “James is special, not sick, but special,” I said into the rearview mirror. “It’s not like a cold or the flu. It’s a special feeling in his heart and in his mind. He feels things very deeply, and when he gets mad, he gets really mad. When he get sad, he gets really sad.” “Is that why he yells a lot?” Emma asked. “Cause it is really loud.” “I know it is,” I answered. “He is afraid.” “Of what?” Emma asked. “He is afraid of a lot of things,” I answered. “He is afraid of loud noises, new places, foods that are spicy…” “And slippery,” Emma added. “He hates eggs.” “Yes, he does,” I said with a laugh. “You know that he’s different. He can’t accept things like you can.” “Well, he should at least accept me,” she said in all the beauty of four year old wisdom. “I’m his sister.” “He should,” I agreed. And then the tears came. Not from Emma. From me. I bought her books about Asperger’s Syndrome. I explained that he needed to go to a lot of doctors, and that she could either get mad about all the long trips, or she could look forward to all the cool toys they had in the waiting rooms. For the most part, she adapted beautifully, and when one of her friends asked why he got so angry all the time, Emma just said, “He has Asperger’s. Get used to it.” Still, we didn’t host sleepovers at our house. As soon as I explained to her friends’ parents that he had Asperger’s, most of them would politely invite her to their house instead. Emma also had to endure the fact that he didn’t want to go to most of her birthday parties. “It’s not about you,” I would console her. “He just doesn’t like all the noise and all the people.” Emma would cry, but I heard her tell him, “I will save a piece of cake for you and bring home a goody bag for you.” The note that touched my heart the most though, was one she wrote years later to him in one of his birthday cards. Itsaid, said, “I hope you have some good days.” I loved the evenness of it, the acknowledgement that he probably wouldn’t have ALL good days, but that he could have some good days. The “some” just did me in. She knew him, she loved him, and she accepted him. Perhaps one day they would be close.
  11. until
    Parents of people with Asperger’s & Autism: You are doing an amazing job. Seriously. Simply the fact that you are on this page, considering going to an event to help better the life of yourself & your child means you care, and you are doing the best you can with the capacity and resources you have. That being said, one of our favorite ways to avoid making mistakes in the future (and ultimately have a better life as a result) is to hear from others who’ve lived it, made the mistakes for us, and share their wisdom. So in that spirit, we invite you to join us as we share the mistakes our parents made when raising us, what they did right, and what we wish they did differently. Get Tickets & Details Here.
  12. “I feel like I’m shielding our son from having a Christmas,” I said to Sean. “I know. Not very merry, is it?” he answered. He was untangling the lights that we were going to put on the tree. “His counselor actually said that we should try to keep things normal.” “Well, that’s fun,” Sean said. He yanked too hard at one of the knots, and two little bulbs popped out, extinguishing all the lights. “Your sister is still coming next week?” “Yeah,” Sean said. “I’ll write the email,” I said. Weeks in advance of company coming, I would “talk them down” before they even arrived. “Let James do his own thing,” I wrote in an e-mail to them. “Go and talk to him, but if he wants to sit in another room, away from the noise, that’s okay.” My sister-in-law called right away. “All that’s fine!” she chirped. “The important thing is that we’ll be together!” I tried not to panic. “I know that Becky will want to play with his Legoes, but James just built a new invention…” She assured me that they would bring their own, that they would respect James’ privacy, and that they would not force him to do anything he didn’t want to do. Siill, when they arrived, my sister-in-law “peeked in” on James, who was holed up in his room and convinced him to come downstairs. The rest of the day was a dance of trying to intervene between Becky and him.. Becky was ten, five years younger than James. She arrived in her typical fashion, loud and laughing. Right away, Becky demanded to know why James didn’t have to dress up like she did. At dinner, she wanted some of his mac-n-cheese. And afterward, when the children were sent off to play a game, she announced that her Legoes were “girl” Legoes. She wanted to play with James’ “boy” Legoes. We left the table to settle the argument, and I quickly suggested that we open presents. I winced as she squealed and screamed, declaring that she got to pass out the presents. James hated loud noises, and he hated not being in charge even more. Later on, we decided to play a game. It required that everyone write down words as fast as they could. James had a hard time with his handwriting, like many autistic children, so I offered to “scribe” for him. He shot me a “Don’t start” look. When Becky broke a rule, James pounced. “It’s not fair!” he cried. “That’s not the way to play!” “It’s okay, just this once,” I tried. “Is it a rule or not?” he demanded. There weren’t any one-time favors in James’ world. After all, life hadn’t given him any. “I’ll just sit this game out,” Becky said. She was a good girl. She was trying, she really was. “No!” James cried. “If you start something, you have to finish it.” Underneath the table, I saw him clenching his fists. I tried to distract him by announcing that it was time for dessert. “I want first and seconds all on one plate!” James cried. “We have company, remember,” I whispered, ushering him into the living room. “We have to serve everyone for the first round, and then if there’s enough, we offer seconds.” “Whatever,” James said in disgust, and he flopped into the recliner. I started to tell him to sit on one of the folding chairs, that the “good” chairs were reserved for our guests, but I swallowed the words. There were so many words stuck in me -- the cautions, the interruptions, the soothings, the explanations, the excuses… and I realized I hated Christmas. It had become a half-hearted attempt to play at what Christmas should be. I went over to Sean and told him that I needed a little fresh air. “A little too much to drink?” he asked. “I have not even had one sip,” I whispered. “Unlike you.” I sat down on the deck. The frigid air didn’t even bother me. My thoughts swirled in my head like the snow around me. You can’t make a true Christmas while trying to soften its impact. You can’t have a special day while sticking to the routine. It’s not Christmas to bake special foods for your guests AND regular foods for your autistic child. It’s not Christmas to go to Church at midnight, and wonder if his meds have worn off. Or not go because yours have. It’s not Christmas when you buy your son a toy, watching with anticipation as he unwraps it, only to have him explode in rage because you bought the AK 980 X model instead of the AK 980 Z. Christmas used to feel special and pretty and full of surprises. I used to cram everything in, weeks spent with family, long visits with friends, day-long shopping marathons, rejoicing in the special moments that are special just because they don’t happen everyday. Now I distilled the experiences for James so they didn’t hit too hard, don’t disturb him, and don’t affect the equilibrium that it’s taken so long to establish. He got overstimulated by too much commotion. Or noise. Or people. Or food. Or sugar. Or lights. Or. Or. Or. My longing for hot chocolate, tons of cookies, twinkling lights, midnight mass, and warm embraces hadn’t gone away. I still longed for the excess, abandon, and excitement of Christmas. I lifted my head and whispered, “I don’t have autism!” The next day I made cookies. I pulled out the recipes for Peanut Blossoms, Chocolate Rum Chip, and Pepper Kokkers. Scouring the pantry for the dusty bottles of ingredients hardly used any other time of the year, I realized that I couldn’t find the expensive vanilla from the gourmet store. I looked and looked, but it was nowhere to be seen. Just when I was about to give up, I realized that it was right in front, face-down. I righted it and read, “A True Extract of Vanilla.” I read the words again, “extract,” I slowly unscrewed the lid to take in the deep fragrance, potent and pure. And it saved me. I realized that I could save Christmas for me and James, by extracting the essentials. We could have the essence of Christmas in just a few preserved rituals and traditions that we both enjoyed. Maybe I could give him “tastes” of the Christmas instead of a feast. I could give him moments, not endless vacations. I could give him one or two guests at a time, not the entire family. I could give him an hour of Christmas songs on the radio, not the entire months of November and December. If I was honest, I got sick of the music after a month too. I could also allow myself certain presents. I could give myself white lights on the tree. I could savor one special meal on Christmas Eve instead of a smorgasbord of meals throughout the Season. I could buy him the gift that I know he wants, check the model numbers carefully, and I could sit back, confident, and relish his reaction. Might not be the surprise that I want, but it would be the reaction that I want. On Christmas morning, James handed me a Target bag. “I forgot to wrap it,” he said. “That’s okay!” I cried. Inside was a soft, blue sweater. I held it up in front of me. “Will it fit?” he asked anxiously. “Perfectly,” I answered.
  13. We're returning to Los Angeles for our flagship workshop, Deep Into Defense Mode Live! We'll be in Pasadena, CA on March 21st & 22nd, 2020 with 40 awesome individuals ready to get out of Defense Mode, gain some clarity & know what to do when it comes to motivation, relationships & more. In this workshop, we focus on 4 major areas: Understanding Defense Mode - What goes on inside the mind & body of someone with Asperger's when they are in Defense Mode? Stop Walking On Eggshells - How to hold boundaries and say no in a way that doesn't put them further into Defense Mode, so you can stop walking on eggshells. Holding Space - How to help someone else get out of Defense Mode, without even talking to them. Motivation Without Coercion - How to motivate someone on the spectrum... without resorting to arguing, manipulation, reward or punishment. Have questions? Comment below or use the chat bubble in the bottom right to get in touch. Want tickets & details? Click here.
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