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Looking for Answers in All the Wrong Places


Kristina Lakes

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The support group for mothers of autistic children met once a month, in an old elementary school. 

The women sat at a lunchroom table. I scanned them all, and only one looked as old as me. Ah, well. I was used to being the oldest mother in the room. I walked over to an empty chair, and asked, “Is this seat taken?”

A red haired woman answered, “No, have a seat.”

As I took my coat off, I noticed that many of the women had their eyes directed to the open door in the back corner of the room. Their children must be in there, I guessed, from the noisy laughter and movement that came from inside.

I asked the woman next to me how long she had been coming to the group.

“Oh, I suppose about a year now,” she answered. She grimaced. “That’s when my son was diagnosed.”

I asked how old he was and what his name was. I waited for her to ask me about my child, but she didn’t. Instead she glanced down at her phone.

I tried the mother on the other side of me.

“I’m Kristina,” I said brightly.

“Caroline,” she said, and smiled.

“I’m new. How many people are in the group?”

“Well, there are about 25,” she answered, “but not everyone comes each week.”

“Who is the leader?” I asked, looking around.

“Tammy, but she’s not here yet,” she said. 

“Did you bring your child with you?” I asked. “It’s so nice that they offer babysitting.”

“It is and it isn’t,” Caroline laughed. “You’ll see. Everyone’s distracted. Mine is in there. He’s five.”

“I didn’t bring my son,” I offered. “I wanted to see what it was like first.”

“It’s good,” Caroline said. “We have a different topic each week. I think this week we’re talking about insurance and waivers.”

Just then a child ran out of the room, yelling, “Mom!” A teenage girl quickly followed and tried to usher him back into the room.

“That’s why the babysitting doesn’t work. They keep the door open for safety, but the kids run out of the room all the time.”

“Maybe they should have it down the hall in another classroom,” I suggested.

Caroline shook her head. “No, we tried that once.” She didn’t elaborate. “Do you have a son or daughter with autism?” she asked.

“Son. James. He’s ten. He has Asperger’s,” I said.

“Oh, on the high end of the spectrum.” 

“Oh, yes,” I laughed. “He’s very smart. He gets all A’s in school, but his behavior is . . . getting  hard to handle. His temper is so bad.”

Caroline didn’t say anything.

“And your child?” I asked.

“Non-verbal.” She looked at me pointedly.

  I didn’t know what to say. I look down, flustered. When I looked back up, she had looked away.

Just then a tall, slender woman walked in and headed to the podium. “Sorry I’m late,” she murmured, as she took some papers out of her bag. She looked up and caught my eye. “Oh, we have someone new,” she cried.

Everyone turned and looked at me. I felt myself turning red.

“I’m Tammi,” she called. “With an I! And what is your name,” she asked. 

“Kristina, with a K,” I said. Everyone laughed.

“Welcome, welcome, welcome!” she chirped. “And did you bring your child?” she asked, taking off her coat. She gestured toward the room.

“Not tonight,” I answered. “He’s home with his dad.”

“How nice,” she murmured. She glanced around the room, counting the people as she went. “18! Big group tonight!” she announced, and we all smiled.

I was tired, I realized, as Tammi with an I!  began to read the rules of the group. “No one should give their last name. Everything said tonight is sacred. It should remain in this room. Medical information that is shared should be regarded as opinion, not fact. . .” 

Sacred? Did I hear that right?  If they started singing “Kumbaya,” I was out of there. I wondered if I can slip out through the back. 

But as the night went on, I found myself writing down notes. Each woman who talked seemed to know more than me. They threw out names of organizations and programs with assurance. They rattled off acronyms easily. Every once in a while, Caroline tapped my arm, gestured at my list, and then wrote down the words that go with the letters. I thanked her each time, but it just made me feel bad. I thought about how she got to know each organization. She’s been there. She has gone through more than me. I knew I should feel lucky, but I just felt bad for both of us.

Suddenly one of the kids yelled, “Mom!” from the room at the back. A mother got up with an exaggerated sigh to go into the babysitting room. There was scuffling, shushing, and we all smiled with understanding. 

Dana, a woman with a wilting perm and bad teeth, interrupted Tammi with a sigh. “Don’t forget to pay Alissa for the babysitting,” she says. “Last week three people didn’t pay, and I had to talk her into coming tonight.”

Mothers nodded. 

Dana continued. “I have something to say about Tillson Health, too. It all sounds good, but they’re not accredited. You put your child in there, and they can’t ever go back to public school unless you want them to repeat grades. We had RayRay in there, you know, but now he’s back in third grade at Beavercreek.”

“25,000 dollars for an unaccredited school?” one woman said.

Dana nodded. “The tuition waiver didn’t even last the entire year,” she said. “If you get anything extra, like speech therapy, that $25,000 is eaten up real quick.” Dana tapped her pencil. “Annnnnnd,” she said dramatically, “their schedule is a nightmare. You have to schedule your vacations at least three weeks in advance, and it has to be approved! Only half of ours was approved.  You can’t just follow your other kids’ schedules for Christmas and Easter, because everyone wants those days off.” 

“Great,” said one woman. “We were supposed to have an interview there next week.”

“Don’t do it,” Dana said. “It’s better to stick with the devil you know.”

I realized I had been expecting tears, not bitter battle stories. These women were seasoned and scarred. I didn’t want to become one of them! And I wanted someone to tell me what DID work, not everything that didn’t. I already knew what didn’t work -- everything I had tried so far.

And none of these children were like James! How was I supposed to fit in with the mothers whose children didn’t even talk? 

I felt my throat starting to get tight. I did feel grateful for the times he said, “I love you.” I did feel grateful for the songs he sang me in the car. I did feel grateful for all the jokes he told. I did feel grateful. But -- I also hated every single time he said I wasn’t his “real” mother. I hated every single time he told me to “$%&* off.” I hated every single time he said he was running away. I hated every single time he said that Emma was ruining his life.

At nine o’clock sharp, Tammi with I! turned off the overhead projector. “Good talk! Good talk!” she said. “Stay for cookies!”

Children streamed out of the room. I thanked Caroline once more. “I appreciate your help, Caroline,” I said.

She was wrapping a gray and black patterned scarf around her neck.  She flicked the end of it. “ No sweat,” she said. “Did you like it?” A young boy sidled up to her and put his arms around her leg. She tousled his hair, and then bent to help him put on his coat. He swatted at her hands, but she deftly avoided them, and zipped it up quickly. He patted her face, then caressed it.  She pulled his hands down, and stood back up.

“Hmm….like doesn’t seem like the right word,” I ventured.

Caroline raised an eyebrow at me. Her son was pushing her legs, and she swayed a little.

“I mean, it’s just overwhelming.”

Caroline nodded. “Nice to meet you,” she said dismissively, and she took her son’s hand to lead him out.

I considered going over to the table with the cookies. Tammi with an I! was holding court, talking animatedly and giving hugs. She was clearly well-liked. I just wanted to go home though. I didn’t need the cookies anyway. I gathered up my things and started to the door. Sean would be putting James to bed right now, I thought to myself. Maybe Sean would be asleep when I got home too, so we wouldn’t have to talk. He had wanted this to be THE answer. To be fair, I had wanted this to be THE answer. I was looking everywhere for THE answer. But this support group clearly wasn’t it. 

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Pete Marczyk

Posted

HEARD on all points.  Thank you so much for writing this.  And nothing can prepare us for how much we love our kids.  All the best to you and your family; we are in this together.

 

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Elizabeth Free

Posted

My stomach was in knots reading that.  I'm an Aspie who has always been the outside in those parent circles, and when trying to get help for my son, found those groups to be more unpleasant than they were helpful.  I even joined an Aspie parent social group on the other side of town.. No dice. Not my scene.

Being an underemployed single parent, I've never been able to locate much less afford any of the helps so many people recite off the cuff in a blasé fashion... Our dismal health insurance and my lack of savvy meant I spun my wheels for a long time, especially because I bought into the lie that being an Aspie was something that needed to be fixed.  So hearing from you was actually pretty validating. It's not just me! 

I'm finally getting to the point (thanks to AE materials) where things are coming together for us (without all the expensive bells and whistles).  For those so disposed there's nothing wrong with them, they're just not our path. But I have loads of hope.  My previously-snarky 22 year old son is taking initiative, expressing affection, and openly talking to me.  I've quit trying to "fix" either one of us and concentrate instead on being teachable.  There is so much to learn here, relearn, and enjoy.  It's so delightful to be in the presence of non-perfect people with big giant hearts, where we can all find our own paths.   🙂  

  

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Totally on point, our son is high functioning and actually from the beginning wanted nothing to do with the "autism" groups of his peers, and didn't want everyone to know he had autism. He wasn't ashamed of it, just didn't want to be defined by it or treated differently before people knew him. So I tried to go to some of these types of meetings on my own w/out connecting my son to the other kids but found it exactly like this gal did. I was grateful my kid was so high functioning but desperate to find mothers like me; which I never did find. When half the people in a room are dealing with ABA schedules, or changing diapers or simply worrying about what happens after the school years are over, you feel bad for even thinking you belonged there. It can be very lonely being a mom of a high functioning autistic child. 

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Dana Campbell

Posted

Well... My response ended up quite long as many of you do not know me as one of the original AE members.(Less than 50 when we started our AE fb group...

Not all autism parent groups are a fit, for sure for everyone, for sure. My Aspie son, Christian is 19yrs old now. Non-verbal until nearly four, than suddenly verbal without eversounding out words. It was kinda wild. 

From his age 3-8yrs old, I created a support group, called SOAR (Salem Oregon Autism Resources). It became a nonprofit.

Thankfully, our particular kids were nearly the same in age and abilities. It had the tone of AE for sure. 

After 4yrs of running SOAR, II was at a crossroads, go back to school, and becomie an autism specialist, or end it. Chose to end it, because I really am a community builder. 

During that same time, I was annoyed with the school district and early childhood Development... (Early intervention preschool) admins of both were not doing their jobs they were paid big bucks for, so I set up their 1x a month trainings and their support groups also. 

Those school-based trainings and support groups were very Hippa-ized like it sounds this one was and did not gel. Many parents were pissed off they had a child with autism. 

Anyway, I quit it all or the sake of my family. My core support group created through SOAR, who had become my dear friends, folded into a new outreach arm of a church Mom's group, called Mom's of hope, joined by a few other moms with special needs kids. Which was a wonderful transition. 

I

Iam grateful for the near decade I have been in AE and all of the advice I was able to be given and also share to those with same age kids and those with younger kids down the line. 

 

This particular part of the original essay, really bothered me. While I do not know what this long-time attendee mom goes through each day, but, this part, broke my heart: 

 

"She was wrapping a gray and black patterned scarf around her neck.  She flicked the end of it. “ No sweat,” she said. “Did you like it?” A young boy sidled up to her and put his arms around her leg. She tousled his hair, and then bent to help him put on his coat. He swatted at her hands, but she deftly avoided them, and zipped it up quickly. He patted her face, then caressed it.  She pulled his hands down, and stood back up."

 

Her little boy patted her face, than caressed it... And the mom pulled his hands down. Those can be sweet quick momments to charrish... And that mom just could not see that. 

 

That's all fir now... I always tend to go loong. 😎

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Diane

Posted

On 10/22/2020 at 4:47 PM, Marleen said:

Totally on point, our son is high functioning and actually from the beginning wanted nothing to do with the "autism" groups of his peers, and didn't want everyone to know he had autism. He wasn't ashamed of it, just didn't want to be defined by it or treated differently before people knew him. So I tried to go to some of these types of meetings on my own w/out connecting my son to the other kids but found it exactly like this gal did. I was grateful my kid was so high functioning but desperate to find mothers like me; which I never did find. When half the people in a room are dealing with ABA schedules, or changing diapers or simply worrying about what happens after the school years are over, you feel bad for even thinking you belonged there. It can be very lonely being a mom of a high functioning autistic child. 

I am that mom.

I have a 22 year old son who is also high functioning...

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