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  1. Are the holidays something you dread? Maybe it’s too many people, high expectation placed upon you or even worse low expectations? You’re not alone. I can tell you that I approach holidays from a very different place now that I know better. What do I mean by know better? I mean listening to my own body and being honest about the capacity I have for celebrations, as well as listening to my twins Lillian & Chloe. Before I understood what Asperger’s/Autism was, I took my daughters behavior personally. I thought Lillian’s refusal to go to Thanksgiving dinner at Grandma & Grandpa’s was a direct defiant behavior. When she had a meltdown at the dinner, I thought she was trying to make the day about her and get her way to make us go home. I was wrong! Lillian’s refusal to go to Thanksgiving dinner was because she knew she would be in a good amount of discomfort. She may not have realized why but she knew it would happen and when it did, she just needed to leave. The noise of everyone socializing, the smells of all the food, and the expectation that she needed to participate in these conversations was too much. So yes, she screamed to make it stop and for me to take her to a safe place. I did not hear or see this at the time and for that I have apologized profusely. Today we talk about the events that are coming up and build a strategy to make it possible for Lillian and Chloe to be there. I am now okay if being there is not an option. Each event is different some examples of what we plan for could be a clear exit strategy. Whether this means I or my husband leaves with them or now that they are old enough to Uber home themselves. We see if there might be a quiet room where they could just chill for a little while if they start to have too much stimuli. We have found sometimes when they just remove themselves from the chaos for a little while they are able to return for a bit more time. Just knowing that there is a plan and that I will listen to Lillian & Chloe has made a world of difference. Lillian & Chloe were not trying to make the holidays about themselves, in fact it is most likely the opposite. They did not want to bring attention to the difficult time they were having. As parents we need to listen to our children. They are telling you what they need even when they don’t have the words. Written by Gail Carrier, Founder of OurTism
  2. Right after James’ diagnosis of autism, his preschool had an end -of -the -year party. Parents talked about their vacation plans while little ones played on the swings and slides. I sat on the curb, away from everyone and glared at them. I glared at his teachers, who had first referred James for testing. I glared at the kids, who had refused to play with him all year and even now, were avoiding him. I glared at the other parents, especially the woman who had said upon hearing our news, “Oh, we wondered what was wrong with him. You seemed so normal.” My husband motioned for me to come over and talk to James’ teacher. I didn’t even shake my head to say no. I just glared. They got the message. My world changed the day my child was diagnosed, and I knew it. And I was mad. I felt like the diagnosis had taken away my child’s future. It had certainly taken away MY vision of James’ future. What would be in store for him? Would he go to a regular school? Would he get married? Would he have a career? Would he be happy? Would our family be happy again? On that day, it didn’t feel like it. I denied the diagnosis long into the summer. I kept saying, “But my baby is smart.” And he was. The diagnosis of autism, ADHD, or Oppositional Defiance Disorder (or all three together, as James has) does not mean your child isn’t smart. It doesn’t mean he is bad. It doesn’t mean you are a bad parent. But it does mean that he will need some help. So eventually, when I was ready, I made some phone calls. I first called a friend who was an occupational therapist that worked with autistic youngsters. I had heard from her that “brushing’ was an approach that showed promising results in calming children who had anger issues. “You literally take a hair brush and stroke your child repeatedly on his arms and legs,” Kelley said. Supposedly, it stimulated the nerves and promoted sensory integration. As we talked, Kelley asked me if I had applied for the autism scholarship. “I didn’t even know there was a scholarship,” I said, writing it down as yet another thing to look up. “Well, all the therapies you are going to need for your child are expensive,’ she said. “If you choose us as a provider, you’ll probably want the extra assistance.” “I need a brushing provider?” I asked. Kelley sighed. I am not dumb. I have a master’s degree. But I felt like she didn’t know what I wanted, and I certainly didn’t know what she wanted from me. Why couldn’t I brush him? Why was it expensive? (And really, why was I brushing him again?) “Maybe you should come in and talk to my boss,” Kelley said finally. And that proved to be good advice. When you are new to the spectrum, phone calls can be very intimidating and confusing. There are code words and acronyms and jargon that therapists used oh-so-casually but sound completely foreign and frightening to a parent new to the spectrum. Talking to someone in person, and seeing their occasional look of sympathy and their almost-constant desire to help, is much easier. Not easy, but better. I found that the medical field had changed, much of it due to political correctness. There were no more words like “handicapped” or “emotionally disturbed.” There were no “special ed” teachers or short buses. Now there were “intervention teachers” for special needs children who rode on their own regular-length bus with a personal assistant that would come right to your door to escort your child to school. And how nice is that? But you have to know to ask for it first. You have to know how and who to ask for what you suddenly, horribly need. And I had never needed so much help before. I needed help interpreting the new words and foreign world before me. That’s when I called a therapist. I asked for someone who specialized in autism. I went every week with James, but more and more, I realized that I was the one who needed to talk and needed the therapy. He was five. He didn’t want to hear about yet another chart to monitor his behavior. To tell you the truth, I didn’t either. I just wanted someone to hear me as I grieved and questioned and cursed. I wanted someone to tell me that it would all be OK. And it will. It will be OK. But not magically. Not easily. I learned that it will only be OK if I made it OK. I had to start. I had to start learning and stop crying. I had to start listening and stop talking. I had to start nodding and stop glaring. I had to start helping my special needs child.
  3. After James' diagnosis of Asperger's, Syndrome, I read hundreds of articles on autism, sensory processing disorder, and oppositional behavior defiance disorder. I signed up for a conference given by Tony Atwood, sat in on "chats" in discussion rooms online, and attended a parenting class at the local YMCA. I joined a Mother's group too. I knew I needed to talk about it all -- but instead, the mothers talked to me. Mostly about diets. Good Lord, the diets that were recommended to me! No dairy! No red dye! No preservatives! Every mother had a different "remedy" for autism. Finally, I asked a friend of mine, Jane, who was an occupational therapy instructor at the local community college to talk with me. We knew each other casually from working together on committees, and I had long admired her no-nonsense style, mixed with just the right amount of compassion. When Jane walked into my office, I felt nervous though. Suddenly, I didn’t know what to ask her. What could I say that wouldn’t let her know how devastated I was? What if I sounded dumb? I really didn’t know how an occupational therapist would help with autism anyway. Jane had reached that time in her life when she was ageless. She could have been 40, or she could have been 60. I didn’t know, and I certainly didn’t know her well enough to ask. Her gray hair was pulled back in a ponytail, and she wore a knit tunic over simple black pants, with a brightly-colored scarf wound around her neck. She looked earthy and casual and elegant, all at the same time. I felt over dressed and frumpy at the same time, in a too-tight skirt and too-high boots. We made small talk for a few minutes, but then, in typical-Jane style, she got right to the point. “So your world has changed.” I nodded. And I started to cry. Five minutes later, I looked up again. “I’m so sorry. I didn’t mean to do that.” “It’s fine,” Jane said. “You take your time.” “I’m okay. Let’s just take it slow. I guess I’m a little more emotional than I thought I would be. I mean, I’m a teacher, and I even took a lot of special ed classes in college, so I could get double-certified. But it all seems different now.” “Now it’s your child,” Jane said. I noticed she didn’t have any makeup on. Her eyes were brilliant though, startling, with their brightness and sincerity. She was so genuine and real, that I felt the mascara weighing heavily on my own lashes. “I started reading about Asperger’s and autism. I think I’ve read about 100 articles already. But some of it just confuses me. A lot of it puts the onus on the parents, is that right?” “The special education field has changed, Kristina, and rightfully so,” Jane said. “We strive to educate the entire family about the disability, and much of the services are provided for in the home setting. Instead of using providers exclusively, a team approach works best in creating a sensory diet for the child.” “Oh, no. ‘Sensory diet? Home setting?’ I hate jargon,” I said with a grimace. Jane laughed. “I’ll try not to use too much jargon then. Actually, the language has changed a lot though, since you were in school. Much of it due to political correctness. There are no more words like “handicapped” or “emotionally disturbed.” There are no “special ed” teachers either. Now we use terms like “challenged” and “special needs” and “intervention teachers.” You’ll get it. Just ask for help. No one can, or should, do this alone. Ask for help when you need it.” I nodded. “ I have never needed much help before. I’m not used to it. Usually I’m the one who helps other people.” “I know,” Jane said. “You have quite a reputation for helping your students.” I looked down. My eyes started to brim with tears yet again. “Here,” Jane said, handing me another tissue from her purse. “Listen, the best advice I can give you is this. It will be okay. But not magically. Not easily. Call a therapist,for you, one who specializes in autism, to get you through the shock. I’ve got some numbers listed here. Then, when you’re ready, let’s get him started with some occupational therapy. I have a friend with a clinic in your area.” I nodded. I knew I needed help. “Thanks,” I said, getting to my feet. “What about your husband?” Jane asked. “Is he doing okay with the diagnosis?” She stopped by the door. “Sort of,” I said. “I’ll tell him all of this. He wants me to take the lead on all the doctor’s appointments and schooling.” I noticed her smile fade a bit. I quickly added, “He’s a great dad. The best. And he loves James. He just . . . well, he doesn’t see everything I do. James isn’t as bad for him. I mean, I’m home with him more, but still, it seems like James takes everything out on me.” “Children only let their true feelings out when they feel safe.” “So it’s a compliment that he’s worse with me?” I asked. “In a sense,” Jane answered. “It certainly doesn’t feel that way. All of his teachers say that he has great manners, and he’s really good for them now, most of the time, anyway. But when he sees me, he just goes ballistic. I mean, seriously, he gets in the car after school, and he starts kicking the seat and yelling.” “Think of it this way. He is under a lot of pressure during school. He’s fighting to keep it all together. He’s like a balloon, blowing up little by little, as the day goes on. When he sees you, he sees a safe person, and he just explodes.” “That makes sense, I guess. It still doesn’t feel good though.” “Well, maybe you could try letting him play on the playground for 15 minutes before you load him into the car. That way, he can let off steam, and you won’t bear the brunt of his anger.” “I like that idea,” I said. “That’s something I can do pretty easily too. Thanks.” “There are all kinds of tips and strategies that we occupational therapists use to make your life easier,” Jane said. “You really don’t have to do this alone.” “It’s a good thing,” I said. “Listen, one of the best things I ever heard about raising a special needs kid is this . . . “ “If you say, “God doesn’t give you more than you can handle,’ I will hit you.” “No,” Jane laughed. “It’s this: ‘Having a special needs child doesn’t take an extraordinary person, it creates an extraordinary person.’” I nodded and smiled like she wanted me to. But later, when Jane was gone, I sat at my desk for a moment and let her words sink in. I wasn’t a great mom. I was mad and desperate and fed up and depressed and overwhelmed. There was no way I was extraordinary. But I was willing to try to become it. For my son.
  4. Since I can remember, I have hated looking back at the child I was. I look at my childhood and I cringe, and for the longest time I have had the resounding thought that I was a stupid kid. I was stupid, weird, and ugly, and that's why other people made fun of me. That's what I thought, for years. But it wasn't the truth. Because when I was seventeen, I was diagnosed with autism spectrum disorder. And while I hate to say it, that explained everything. For instance, I have never understood social norms. It started out fairly normal, the only people who picked on me for not knowing at first were other kids. I didn’t understand why, but I had an understanding that kids picked on each other and besides, they were all still my friends … right? Looking back, a lot of my “friends” from that time just liked having me around to laugh at. But soon I had bigger problems. I was getting older. But I still hadn’t learned the rules. And it was starting to frustrate adults now. Did you know, for example, that it’s considered inappropriate for a fourth grader to write about a family that openly dislikes each other? I certainly didn’t. But my teacher made sure I did. In front of the whole class. A few years later, junior high came around and, well, I still didn’t know everything my classmates knew, but for the sake of brevity (and not sounding like I’m too full of self pity,) I’ll stop here, but needless to say, I was still picked on until 10th grade. But I blamed myself! I spent a long time telling myself, “If I had spoken differently, or just not talked at all, I would have been FINE!” and “Why did I ever wear those stupid clothes, and those stupid glasses, and that stupid hair?!” and of course, the favorite “I was just a weird kid, so of course people would make fun of me.” When I started writing this out, I still thought that it was all me, and that I was weird. I didn’t expect to unpack all of this. But this is the conclusion I have reached. I was never the problem. My symptoms were not the problem. I was displaying signs of a disorder that no one knew I had. So, to the child I was; I’m so sorry. I have hated you and blamed you for so long. You were never any of the things I, or anyone else called you. It was never your fault. It may take me awhile to fully stop being mean to the kid I was. But it is a journey I know I need to make. And if you felt the same way about your younger self, I hope you can do the same.
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