Staci Grosser: Parenting a Child with Autism // A mom shares her story of learning her son has autism and all of the hurdles their family has had to jump in the process. // #autism #parenting #kids #specialneeds #story #inspirational

 

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An Autism Mom Shares Her Story // #autism #specialneeds #parenting #kids

When Staci Grosser gave birth to her first child 10 years ago, she was expecting a four-pound baby due to growth retardation in the womb. However, Renner’s birth weight was a full five pounds. Staci and her husband, Ainslie, were extremely relieved that their baby boy would not need a stay in the NICU and could immediately go home to their house in Franklin, Tennessee.

Renner was a gentle baby, and his parents’ only initial concern was that his mouth muscles weren’t developed enough to suck well. However, the issue was soon resolved, and Staci and her husband, Ainslie, thought everything was fine.

By the time Renner was a year old, Staci and Ainslie noticed that he wasn’t very interactive. He had no interest in playing with them. He also wasn’t doing some basic physical movements that most one-year-old children are able to do, such as pointing and clapping. Staci would take his hands and manipulate them to do the actions but, as she says,

“It’s like his brain just didn’t understand it at all.”

The couple was concerned, but as Renner was their first child, they weren’t exactly sure what to look for or what was normal.

At 15 months, Renner started walking, but his mind couldn’t grasp how to climb steps or climb onto things. Staci says, “I would have to move his feet up the steps of the ladder, and he didn’t act like he knew what he was supposed to do with his feet.” He also would only touch things with one finger. For instance, when she sat him down at the piano, he would play one note with one finger, instead of the usual open-handed banging that most toddlers would do in that situation.

If they tried to give him a toy, he wouldn’t take it. He would put a toy up to his ear to listen to the vibration of it. He would put his ear down on hardwood floors to listen to people walk. He wouldn’t respond to his name when they called. He acted like he couldn’t hear them, but they knew he could hear very well, because he could hear an airplane 10 miles away. And, unlike any child Staci had ever known, he didn’t put anything in his mouth, including food.

Staci talked to Renner’s pediatrician about their concerns, but he checked Renner out and said he was fine. The doctor even said he was sure Renner didn’t have autism. He claimed Renner was just a picky eater, and he would eat when he was hungry. He told them to just set out a plate of food, and Renner would eventually eat it.

He did not eat it. Staci went to bed in tears that first night because he didn’t eat anything and she felt like she was starving her child. The next day she started feeding him again. She knew her child, and she knew without a doubt that he was not going to eat of his own free will. At eighteen months they were still feeding him baby food and rice cereal and a bottle. Then they introduced him to Goldfish® crackers. He would eat them, but only if someone else put them in his mouth.

Eventually, Ainslie decided he was going to teach Renner to feed himself. He took Renner’s hand and made his fingers wrap around a cracker. Then he forced the hand to Renner’s mouth. Meanwhile, Renner was kicking and screaming. But Ainslie persevered, and when the cracker made it into Renner’s mouth, the child was visibly shocked.

So Ainslie did it again, this time with less screaming and kicking. Then he encouraged Renner to pick up a cracker on his own. He did, and as he aimed for his mouth, he hit his cheek and nose and then finally got the cracker into his mouth. Staci says,

“You would have thought he won a million dollars.”

“He was so happy and proud of himself because he figured out he could put food in his mouth for the first time. He had no idea he could do that on his own.”

Again, they talked to their pediatrician. And again, he dismissed their fears and concerns. He sent Renner for a hearing test. It was fine. But at the age of two, he wasn’t talking, and Staci and Ainslie knew something wasn’t quite right.

Then Renner started “flapping his wings,” as they called it. He would flap his hands when he got excited, and his parents thought it was adorable. Then one night the couple was watching YouTube videos when Staci ran across one with a kid flapping his hands like Renner.

They laughed at the kid’s excitement until the dad came on the screen and said something to the effect of, “He’s flapping his hands, he’s happy, he’s laughing, he’s giggling. You think this is cute, don’t you?” Then he said,

“This is autism.”

Staci describes her immediate response as feeling as if she’d been punched in the stomach. She and Ainslie started putting two and two together as the dad talked about other signs and symptoms of a child with autism: not responding when their name is called, not eating, repetitive behaviors, flapping their hands, not touching anything.

“They were all these autism symptoms that we didn’t know anything about,” Staci says. “I didn’t know anybody with autism, and I didn’t know what to look for. And I never suspected it would happen to us. When we saw that video, we both knew Renner had autism, even though our pediatrician said he was fine.”

Renner’s Treatment

Staci had a friend who was a speech therapist and one who was an occupational therapist, and they both told her to call Tennessee Early Intervention System (TEIS). She did, and TEIS sent a lady to their house to interview Staci and observe Renner.

Rocking ChairWhile she interviewed Staci about Renner’s developmental progress and symptoms, Renner sat on the floor in the next room rocking a rocking chair. He watched the way it hit the floor. He followed the shadows with his eyes. He rocked it faster and slower. They called his name, and he didn’t respond. He had no interest in eating. He just sat and rocked the chair for an hour and a half.

As the woman left, she told Staci she would need to take her findings back to her board to make an official diagnosis. But she also said there was no doubt in her mind that Renner had autism. Once the board met, they would figure out a treatment plan.

What Staci learned is that early intervention is key when it comes to a child with autism. The years from two to five are crucial to giving them the tools they need to live a normal life. So Renner started speech therapy and occupational therapy. However, they seemed to have no effect on him. He was not improving in any way. But they persevered, because they knew these were important years for him.

Next, they took Renner to a DAN (Defeat Autism Now) doctor. They told the doctor what they were dealing with, and he gave them so much information that Staci was overwhelmed by the scope of what he wanted her to read and implement. Just dealing with a fact that she had a child with autism was almost more than she could handle—reading countless books was beyond her ability. She was also frustrated by the dietary suggestions. Renner would eat nothing but cheese and crackers, and the doctor wanted her to remove gluten and casein from his diet. That just wasn’t possible.

Meanwhile, Renner’s little sister Jarrah had been born. Jarrah developed very quickly in all ways. She was talking in complete paragraphs by the time she was a year old, and she became Renner’s voice. If someone asked him, “What’s your name?” tiny Jarrah would pipe up, “That’s my brother. His name is Renner. He can’t talk.” She would also put his socks and shoes on him when it was time to go outside.

When Staci and the kids would go out in the backyard, Jarrah would run to the slide, go down it, and then play in the sandbox. Renner, on the other hand, would stand at the back door and open and close it over and over and over again. Staci would sit on the backyard swing and cry, because she didn’t know what to do to help her son.

Not only would he repeatedly open and close doors, but he would also turn faucets on and off, and he would turn lights on and off until the bulbs blew. He opened and shut doors all night long until they invested in some Monkey Locks (which Staci highly recommends).

He was very unlike the other kids she knew. “He didn’t do anything. He didn’t play with me. He wouldn’t do a puzzle with me. He wouldn’t do anything with me.” She says,

“I felt completely rejected by my own child.”

He couldn’t talk, and he would scream endlessly. She was truly at the end of her rope much of the time.

A few years after that initial visit with the DAN doctor, they returned, because they were in a desperate place. But this time, Staci was able to vocalize her needs. She told the doctor: “The last time I was here you completely overwhelmed me. I didn’t even know where to start. I don’t work that way. If you want to help us, you’re going to have to give us one or two specific steps at a time.” Thankfully, the doctor completely understood and worked very well with them from that point on.

The doctor did some blood tests that revealed Renner has an MTHFR mutation (which Staci also has), which basically means his body has a problem with processing folic acid. The doctor gave him a broken-down version of folic acid called methyl folate. He said there was a 50 percent chance the supplement wouldn’t do him any good, but there was also a 50 percent chance it would work like a miracle.

Red TricycleWithin 48 hours of taking methyl folate, Renner was talking. He was riding a tricycle for the first time. He was buckling his seatbelt for the first time. It truly was like a miracle for him. He still takes it, and it still does its job. But Staci says the doctor wasn’t kidding about the 50 percent it doesn’t work for. Sadly, several of her friends have tried it with their kids and it hasn’t worked.

When Renner first started talking, he would say the same thing over and over again. He might say, “I see a bird,” 50 times in a row. For about a year, most of his speech was repetitive. And then he finally asked his first question: “Are we going to the doctor?”

Staci and Ainslie were elated. It was a big deal for him to ask a question, because he had trouble answering questions. They would have to give him the options, because he couldn’t come up with them on his own. They might say, “Would you like a juice box? Yes or no.” So the fact that he was able to ask a question was a huge step for him.

Before taking methyl folate, Renner had a lot of trouble making sense of what to do with his body. For instance, he couldn’t figure out how to move his feet in a circle in order to ride a tricycle. But once he was on the supplement, he got on his tricycle and rode it all the way around the block. He refused to let anyone help him, which was also unprecedented. That one supplement changed their lives.

Renner’s Education

When Renner turned three, he was enrolled in a preschool for kids with autism. That first year, all of the kids in his class had autism. When he was four, half of the kids had autism and half didn’t, so that a child with autism could learn how to play, how to eat, and so on from typical kids. Both of those years were good for Renner and for Staci. The teachers would report on what he was doing and be very encouraging to Staci.

However, the final year in that school was difficult. The reports were not good. Staci said, “I felt like they were asking me to fix him before I bring him back.” She was frustrated, because it wasn’t something she could fix or cure.

Renner started kindergarten at a public school with a full-time aide in a regular classroom. Staci recalls his first day of kindergarten well. She let him out at the drop-off line and then immediately wondered how he was going to find his classroom. He was not talking at that point, so if he got lost, he couldn’t ask for help or even tell anyone where he was supposed to be going.

After many frantic phone calls, Staci finally got in touch with someone at the school. They created a plan whereby Staci would drop him off at the front door of the school, where an aide would meet him at the car. Pick-up would work the exact same way.

In first grade, he started doing amazing calculations in his head. Someone could tell him their birth date, and he would say, “You’re 42 years old and were born on a Tuesday.” Or he would say to Staci, “Mom, are there 1,440 minutes in a day?” And she would get out her calculator and do the math. He was always right.

Renner Grosser

Around that time, Staci and Ainslie had the privilege of hearing Temple Grandin speak. Grandin is a professor of animal science, a livestock consultant, and the author of The Autistic Brain, and she also happens to have autism.

After the event, the couple got to talk to her, and they told her about Renner’s calculating abilities. She suggested they ask the school about getting him into a gifted math class. Staci talked to the school, and they interviewed Renner for the program. She doesn’t know what happened in that interview, but he did not get into the program and, sadly, he has never calculated like that again.

Renner had a full-time aide at school through third grade and then started fourth grade last fall without one. But partway through the year Staci requested full-time help for him again. He had started having some major sensory issues and had developed some fears that made him very agitated in class.

These symptoms had started a few years earlier: music was too loud and lights were too bright. A kid would accidentally bump him and he would scream out in pain. He saw a kid get hurt by a ball, so he refused to be around balls or go outside for recess. Then he heard about somebody getting stung by a wasp, so he was afraid to go outside in general.

The family had become very isolated, because Renner would scream the entire time they were away from home. He was obsessive over certain things that made life nearly intolerable. He would only go to school and to church.

Renner’s Medication

After contracting the flu earlier this year, those symptoms greatly increased in severity. Staci knew they had to do something to help him, so the doctor recommended various supplements such as CBD oil and lithium orotate. Some did nothing for him, and others helped in some ways but hurt in others.

She then took him to a medical doctor at Mercy Children’s Clinic, which pairs patients with both medical and psychiatric doctors in order to oversee their entire care. The doctor suggested putting Renner on Prozac, because it helps a lot of kids with autism cope with life.

Staci did not want to put Renner on Prozac. She thought it was just going to cover up the problem and potentially change his personality. They met with a psychiatric nurse, who talked to them about Renner’s anxieties and troubles at school. She truly believed that Prozac would help, so Staci finally agreed to a prescription. However, she did not pick it up because she hadn’t fully decided that it was what would be best for Renner.

Not long after, the family left the house to go for a walk. They hadn’t made it across the street before Renner saw a wasp and screamed and pulled at his parents’ arms until they went back inside the house. He refused to go back out. Ainslie immediately drove to the pharmacy and picked up the prescription, and they started giving it to him that day. She says,

“In a couple of days it was like he was a different kid.”

“He started having full-on conversations. He started taking the stairs two steps at a time. He wasn’t sitting around anymore. He wanted to be up and playing with his toys. He started jumping on the trampoline. He just started getting up and doing stuff just inside the house, whereas before he just sat there.

“So as the weeks went by, about three weeks into Prozac, his teachers were sending me emails that he’s doing great, he’s doing his work, he’s paying attention. I started hearing a boom-boom-boom outside my bedroom door, and I went out. He had gotten a little ball and was playing ball. He was terrified of balls. He wouldn’t even get in the car if Jarrah’s soccer ball was on the floorboard. And he’s in the living room playing ball? He found a T-ball set and started playing T-ball. He got one of those exercise balls and started kicking that around. He started playing catch with my daughter. He fell and hit his head on something and didn’t even cry. It was wonderful!”

The next hurdle to jump was the fact that Renner wouldn’t eat. So the doctor put him on Periactin, an antihistamine that stimulates hunger. After taking the medication, Renner started eating. In a short amount of time, he has gained five pounds. He is still in the one percentile for his age and height, but he’s actively working on gaining weight. He has his own scale and weighs himself, and he gets excited when he gains a pound.

A few weeks ago he said he wanted some Oreos. Staci says, “The entire family jumped up, ran to Kroger, and got him a bag of Oreos, because he actually wanted to eat something.” A couple days later he said, “I’m bored. Can we go somewhere?” Again, the whole family jumped into action before he could change his mind. Staci says, “It’s a hoot when he actually wants to go somewhere.”

School also became easier after beginning the new medication. He’s not as anxious about someone bumping into him or hurting him. He says he’s often anxious being around kids because they’re unpredictable.

He prefers being around adults, because you can predict what they’re going to do or not do. They’re not going to throw a ball at you when you’re not looking. They’re not going to step on your toes. But he’s better able to manage being around kids these days. He even started going out to recess, which he had refused to do for a long time.

Renner also started reading much better. Before going on Prozac, it took him 17 minutes to read 1000 words in a reading speed test. Now he can read 1000 words in seven minutes. This has also helped with homework time. He used to spend an hour and a half to two hours on homework. But now it typically takes less than an hour.

That’s not to say there aren’t still some sensory issues. He has a big aversion to noise—especially music. Nobody can sing in his presence without him melting down. This is a big issue first because his sister loves to sing, and second because his dad is a sound mixing engineer who works out of a home studio.

They would love to sound proof the studio, but that’s an expensive undertaking. So when Ainslie is working, Renner has to go into a different part of the house, especially when he needs to concentrate. So Staci has set up a homework station for him inside her closet, where he can focus without hearing the sound of music.

But there are good days—more now than just a few short months ago. Staci was recently able to show Renner how to pump gas. She can take him into a model home and ask him what he likes and doesn’t like about it. “For him to tell me from his little mind—I just love it. I love the fact that he can talk and he can tell me what he thinks and feels and just how he sees the world. Because it’s a very unique perspective on things.”

Renner certainly is a unique kid who comes with unique challenges. While it has in no way been an easy road for him and his family, they stick together and do everything they can to help him live an enjoyable life. And not only that, but Staci and Ainslie are determined to create a good quality of life for everyone in their home. They won’t let autism defeat them.

Thanks for reading the Grossers’ autism story. Hopefully it has been educational for you and will help you better understand the challenges of autism for the person with autism as well as the family. 

 

Click here to read Staci’s tips for autism parents and their friends.


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