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“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.
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.
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.