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Asperger's Means Afraid?

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After the Diagnosis

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Kristina Lakes

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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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JulieH

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Posted

This resonates with me on in so many ways from being the parent educator, to understanding that the OT in our life is the one who truly understands and wants to provide help to the whole family, to feeling inept as a mother, to apparently being the "safe" person who bears the brunt of behavior. The ending makes so much sense. Thank you so much for writing this!

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Kristina Lakes

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Posted

Thanks for reading it! I really appreciate it. There will be more!

 

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Smileot

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Posted

❤️  I love this.  Sometimes the words that we need to hear are the words that we don’t want to hear.  But God knows what we need to have.  So glad that OT is a blessing for you.  It truly does put the right knowledge in front of you for all times!  

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