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  1. My 5 year old son, C, is one of a kind. He is the most imaginative person I have ever met. He lives in a world full of magic, but visits our mundane planet to spend time with the people he loves (and for the chocolate). The sensations on this planet can be hard for him to handle. Some noises are so loud or distracting that he has to plug his ears. Some places that are so quiet that it makes his head hurt. He is afraid of the dark, but bright lights make him edgy (even if he doesn't realize it). His sense of smell and taste can be troublesome too. He's actually part wolf, and that makes him an extra good smeller and taster. Flavors and scents that might be pleasant to me are overwhelming to him. Worse than the smells and sounds on Earth are the crazy customs of Earthlings. They insist that you stuff your feet into uncomfortable shoes every single day instead of running barefoot as nature intended. Their silly human clothes have scratchy tags, tricky zippers, and pinchy spots, making it impossible to relax or to move the way he wants to. Plus? They have this ridiculous idea that clothes be divided into girls and boys sections. As if genetalia were a requirement for color preferences. Then there are the people, themselves. Impossible creatures! They don't understand him at all. Even though he mastered Earth language at an early age, he has a habit of forgetting it when he gets nervous, and humans definitely make him nervous. Maybe it's because he never really knows what they are going to do? They are endlessly confusing, and it can be hard to tell which ones are friendly and which ones are dangerous. Also, humans have WAY too many rules, and most of them don't even make sense. Everyone thinks they can tell him what to do, where to go, how to act, what to say, even who to be. Sometimes it feels like he has no control over his own life, and that makes him angry. I'm his mom, and I love him just the way he is. I always will. I don't want to change him, but I do need to find a way to make him feel more at home here on Earth. If only all of these humans would learn to loosen up a little.
  2. 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.
  3. 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.
  4. 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.
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