Frumpfighter

Archive for the ‘Autism spectrum’ Category

CEDAR RAPIDS — After the Ellis Boulevard home they were renting flooded last June, Patty Blackwell and her family camped and stayed with relatives until they were able to move back.

This disruption in their routine took its toll on the family, especially on Blackwell’s 3-year-old daughter.

“She threw temper tantrums, was non-compliant,” said Blackwell, 46. “I let her walk all over me.”

Charts are kept for each child's progress on specific tasks.

Charts are kept for each child's progress on specific tasks.

At her wits’ end, Blackwell enrolled her daughter in the TIES program when it first became available in Eastern Iowa in October. TIES, Teaching Interventions to Empower and Strengthen Families, is a proactive parenting program for children under 6 with mild to severe behavior problems.

What makes the program unique, according to program coordinator Craig Meskimen, is that parents and children go through the program together.

Parents are taught eight strategies focusing on positive interaction with the child. The key is telling children what they are doing right rather than what they are doing wrong.

The eight strategies include:

  1. State expectations in advance.
  2. Catch your child being good.
  3. Limited reasonable choices.
  4. Say “when,” “then.”
  5. Plan ahead.
  6. Know what’s reasonable.
  7. Stay calm.
  8. Use neutral time.

Blackwell said her daughter is a success story of the program.

“Thank God for this place,” she said at a recent open house at the Resource Center Building on the St. Luke’s Hospital campus, 1026 A Ave. NE. 

Blackwell is in the “payback” phase of the program. Funded by a grant through Linn County Community Empowerment, the program is offered at no cost to parents. In return, parents who have completed the program with their children pay back by training new families.

Aaron Jarvis, 31, of Marion, also is a charter parent who is now in the payback program. He was referred to the program by Grant Wood Area Education Agency.

Skeptical at first, he now says he’s a firm believer in the program.

His daughter, now 4, experienced separation issues after her mother left when she was a baby. Her aggressive behavior escalated when she was 3.

“She would scream for two, three hours at a time,” Jarvis said.

He could see a difference in his daughter within three weeks of the program.

“She wanted attention and knew bad behavior worked,” he said.

But parents need to ignore the bad behavior, as long as it’s safe, he said.

“They can get the attention they want by being good.”

With his daughter’s behavior under control, things are less stressful at his house.

“Behavior problems with a child are the last thing you need with the flood and recession,” he said. “You want to be able to go out and have a good time.”

He believes in the program so much he plans to volunteer after his payback time is completed.

“It is so gratifying to see changes in other children,” he said.

He distributes fliers at preschool and day care to spread the word about the program.

The program originated in 1969 in Tennessee to treat children with Down syndrome and those on the autism spectrum. However, Meskimen said there is no minimum or maximum behavior for a child to qualify for the program.

Keith Pitts, 33, of Cedar Rapids, said 90 percent of the program is focused on changing the parent, not the child.

He and his wife, Emily, adopted three children from foster care, making the bond even more difficult from the onset.

His son was diagnosed with attention deficit hyperactivity disorder, and Pitts wanted to try this program before medication.

“He’s an amazingly different kid,” he said.

Ignoring the bad behavior is difficult at first for both the parent and the child, he said.

The child needs to realize that “no matter how I act out, I’m not going to get attention unless I’m being good,” Pitts explained.

Parents need to be consistent with the program’s skills or the information will not be retained, he said.

Kenny and Kim Petersen check out the charts marking their son's progress at home.

Kenny and Kim Petersen check out the charts marking their son's progress at home.

Kim Petersen, 32, of Cedar Rapids, came to TIES “pulling my hair out” fighting with her husband, Kenny, about their son’s behavior problems.

“Now he’s done a 360,” she said of her son. “It’s not just us teaching him, he teaches us.”

Parents are encouraged to keep a tally of every time the child does something negative. Parents also are encouraged to be consistent with ignoring bad behavior and recognizing good behavior. 

Once the program is completed, the families take the strategies home with a written plan. Andrea Dorn, of the Abbe Center, said the home program is written in three phases. First, the TIES staff writes a home program for the parents, then the parents and staff write a program together. Finally, the parents write their own home program to fit their child’s needs.

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It wasn’t too long after my son, Sage, was born in 2002 that his day care providers alerted my husband and me about delays in our son’s development.

He didn’t respond to sights and sounds like a typical 4-month-old. So we had his hearing (which was fine when tested right after birth) and sight checked, including a MRI to check for any abnormalities in his brain. The hearing and MRI results came back fine but it was discovered he had a small, gray optic nerve. He was diagnosed with optic nerve hypoplasia which can range from mild to debilitating.

Soon after, we were referred to an early intervention program through Kansas Infant-Toddler Services. Thus began my dread of evaluations. In my mind, my baby was just a little behind in some areas and everyone was blowing things out of proportion. In one of his evaluations at day care, a teacher’s assistant said he didn’t smile at people or show affection. Are you kidding me? He always smiled at me and was a cute, cuddly baby.

As the evaluations continued, so did my annoyance. At 13 months, his displayed skills of a 6-month-old. At 18 months, he was more like a 10-month-old. I felt once he finally learned how to walk, things would be fine. It just took him a little longer to learn things.

When we moved to Iowa in 2004 when Sage was 18 months old (and still not walking), we were referred to Grant Wood Area Education Agency for early childhood services. Within a couple months he started walking and I didn’t think Grant Wood’s services were longer needed. But they were. Sage still had delays in his speech as well as gross and fine motor skills. The fine folks at Grant Wood worked with him and made sure we knew about other available services.

A year later when Sage was diagnosed with Pervasive Development Disorder – Not Otherwise Specified on the autism spectrum, we weren’t all that surprised. Jolted, yes, but not surprised. The evaluations kept coming and kept breaking my heart. Now he wasn’t just months behind in certain areas, but years.

A year ago while preparing for Sage to enter kindergarten, my husband and I went through our first official IEP meeting.  Mandated by the U.S. Department of Education, the Individualized Education Program is designed to fit the needs of each student in special education. There were five or six people at the table discussing my baby. All of these professionals are good, caring people but in that setting it seemed like I was sitting in front of a firing squad listening to everything that was needed for my son’s special needs.

Last week we met with almost the same group of people to discuss Sage’s progress in kindergarten and prepare his IEP for next year. I no longer felt like I was in front of a firing squad. I don’t know if that was because I knew everybody in the room or by now, I am getting used to these evaluations. I was pleased with his progress. He is at grade level academically but still behind socially and behaviorally. Since I am quite aware of the second part of that statement, I’ll focus on the first part. Grade level.

Trust me; I know these evaluations are tough. Nobody wants to hear their 5-year-old has the skill level of a 2-year-old in some areas. But if somebody is trying to tell you something about your child, listen. And then let them help you and your child. Because being at grade level by the time they are in first grade is a lot better than ignoring the problem or waiting too long.

An open house for a proactive parenting program will be held from 3:30 to 5:30 p.m. Thursday, April 16, at the Resource Center on the second floor of St. Luke’s Hospital, 225 12 St. NE, Cedar Rapids.

According to program coordinator Craig Meskimen, Teaching Interventions to Empower and Strengthen families, or TIES, is a positive parenting program for children between 18 months and 6 years old. What makes the program unique, he said, is that parents and children go through the program together.

“Parents don’t just drop their kids off,” he said.

Parents are taught eight strategies focusing on positive interaction with the child. Parents need to tell their children what they are doing right rather than what they are doing wrong.

“If they are sitting and being quiet in church, tell them exactly what they are doing right,” Meskimen said.

All eight strategies will be taught at four stations during Thursday’s open house. The goal is to control disruptive behavior before it begins with positive reinforcement.  

TIES is the result of a partnership of the ABBE Center for Community Health, Grant Wood AEA, Healthy Linn Care Network, Mercy Medical Center, St. Luke’s Hospital and Linn County Community Empowerment.

It is offered at no cost to parents but has a payback system – as parents learn the program, they then teach other parents.  

Although the program was developed in 1969 in Tennessee to treat children with Down’s syndrome and those on the autism spectrum, Meskimen says there is no minimum or maximum behavior for a child to be involved.

Children in the program range from “whiny” to destructive, he said.

The program works with parents and children on an individual basis, depending on the child’s behavior. The behavior is targeted and the parents need to realize how to control that behavior, Meskimen said.

This TIES program is the only one in the Midwest. It has been available to Eastern Iowans since Oct. 13 and has received a positive reception, Meskimen said. The evening program is full with a waiting list and the daytime program has a few spots left.

“Parents are here because they want to be,” Meskimen said.

For more information, call (319) 558-4861.

If there is any other mother in the world who is beaming more than me tonight, I would like to meet her and swap stories. Here’s mine:

Tonight was the spring music program for the kindergarten classes at Tilford Elementary in the VintonShellsburg School District. My son, Sage, has been preparing for this concert for months. He sings the songs in the bathtub and plays them on his keyboards.

My son Sage, in the yellow shirt, having a great time at his music program.

My son Sage, in the yellow shirt, having a great time at his music program.

There’s never been any doubt he loves music and has a beautiful voice. However, Sage’s issues with Pervasive Developmental Disorder-Not Otherwise Specified (on the autism spectrum) and Attention Deficit Hyperactivity Disorder have made any day care or school program an adventure. I’ve never been to a program where Sage stands still, doesn’t need an aide or even participates.

Until tonight.

I’ll admit I was a little (OK, a lot) worried about how Sage would react to standing on the risers for 45 minutes in front of an audience in the auditorium. He told me his music teacher has been instructing him to stand in place and not walk from riser to riser. Apparently, this has been a problem during rehearsal. I, too, have been telling him to sing pretty and stay on the riser.   

But I’ve been through this before. Sage will sing his songs all the time at home and constantly talk about the upcoming concert, only to be instantly distracted when the program begins. However, the moment he stood on the riser tonight, I knew it was different.

He stood there, straight and tall with his arms to his side, with a huge smile on his face. He sang the words to every song with unbridled joy. He did the moves and danced at the right time with his classmates. And he managed to bring tears to his Mommy’s eyes. I, too, was smiling through the whole show. I wasn’t my usual tense self hoping for the program to end before Sage ran off.

No, I was a proud Mommy, thrilled to see my son focus enough to enjoy himself doing the things he loves the most – singing and dancing. I used to be wistful during children’s programs at church and school, wondering if my child would ever be able to participate. Now, I can’t until the next one.

Thanks, Toots. You’ve brightened by day. And my life.

Gazette Communication’s Information Content Conductor Steve Buttry (in short, my boss) posed a question at the end of his March 23 column regarding the Linn Area Reads program.  This year’s program features “Tallgrass” by Sandra Dallas and Harper Lee’s classic novel, “To Kill a Mockingbird,” which delves into the delicate issue of racism in America. Steve asked readers what issues a modern-day Harper Lee should address today.

Longtime Cedar Rapids resident and Gazette reader Ray Buck e-mailed Steve of a possible Harper Lee in our midst today.

Rules by Cynthia Lord

Rules by Cynthia Lord

Ray wrote: “Cynthia Lord and she has written a lovely children’s book, Rules. It is a novel that looks at feeling different yet finding acceptance in today’s crazy, demanding world. You mentioned both of your books were told through the eyes of a young girl. Rules is a story told by a 12 year old girl with an autistic younger brother. About a snooty new neighbor and a young man, ‘handicapped’ with no voice.”

Steve forwarded me Ray’s e-mail because I often write about my son, Sage, who is on the autism spectrum and has ADHD as well. Ray is the grandfather of an autistic child, Jack.

What struck me most about Ray was his willingness to learn about the disorder that affects approximately 1 in 150 children. Autism is a difficult disorder to understand and, sometimes, to accept. It affects an individual’s ability to socialize, make transitions and in extreme cases, function. There are outbursts, tantrums, obsessions, inappropriate comments, incessant talking, and, sometimes, no talking at all.

It is instinctive to think these children are “bad” and their parents are not disciplining them enough. It can be especially difficult for grandparents and others  in Ray’s generation (he’s 68)  to understand these children. But Ray and his wife, Karren, are making every effort to understand their grandson.

When the Bucks’ grandson was diagnosed with autism, their son Brad and his wife Traci involved them with the process.

Ray wrote me in an e-mail: “I don’t recall we had a difficult time understanding or accepting his diagnosis because his parents included us in everything, right from the start. What they were feeling, what they were doing to help Jack.”

autism-ribbon2April is Autism Awareness Month and I hope more and more people take on Ray and Karren’s attitude of understanding and acceptance.

The Bucks were kind enough to drop off a copy of “Rules” for me at the office. I finished reading it last night and agree that it teaches a valuable lesson and should be read  by many, especially young students.

“Rules” focuses on a 12-year-old girl, Catherine, who is torn between taking care of her younger autistic brother and making friends with the new hip girl next door. To make things more complicated, she develops a friendship with a non-verbal boy in a wheelchair while going to her brother’s occupational therapy appointments.

At that age, there is a need to impress peers , and having your “different” brother tagging along and acknowledging your handicapped friend to the “cool kids” just doesn’t fit the mold.

I won’t tell you the ending, but I think you’ll be pleased with Catherine’s maturity.

I have set up an Autism Awareness Month page on the Frumpfighter blog. I invite anyone affected by autism to share their story. Please e-mail me at angie.holmes@gazcomm.com or ajh1109@mchsi.com

Today was as heartbreaking as any I’ve had in the 6 1/2 years I’ve been a parent. My son, Sage, has had his share of doctor’s appointments, therapy and difficult moments in the journey of being autistic and recently diagnosed with ADHD and anxiety.

He does have awkward social skills and tends to run from one place to another so quickly, you have to wonder what is going on that brilliant, yet busy, mind of his. But he is a sweetheart and loves all people without prejudice.

This morning when I saw his little neighbor friend outside, I told him to go out and play with him. After a long winter of being cooped up in the house, he was excited to see his friend again. Last fall the boy, who is probably 4 or 5 years old, and Sage were the best of buds.

But over the winter, the boy changed and Sage remained the same. His little friend is now buds with his older brother and his friend, who just last fall ignored him. Now it seems the threesome is a little too cool to play with Sage. Don’t get me wrong, I understand Sage can be difficult to play with as he tends to be in his own world sometimes.

But that does not make him devoid of feelings and the need for friendship. Each time Sage approached the boys today, they told him to go away. Even his best bud from last fall. Happy-go-lucky as he is, Sage went and rode his bike in the neighbor’s driveway.

I’m sure I am taking his rejection much worse than he is. I know this type of behavior is part of growing up, whether you are autistic or not, but I am worried that someday his cheerful spirit will be crushed. While the other boys have obviously changed, I hope Sage will not.

Here is a column my husband wrote about what is “normal” after he spoke to a class about Sage: http://watchingwheels.wordpress.com/

It was almost three years ago my son Sage was diagnosed with Pervasive Development Disorder – Not Otherwise Specified, which falls somewhere on the higher functioning end of the autism spectrum.

Sage learning how to walk at 20 months.

Sage learning how to walk at 20 months.

Then 3 ½ years old, Sage had always shown signs of developmental delays. He didn’t roll over or sit up the same time as other infants did, he couldn’t feed himself on his first birthday as his daycare-mates easily used forks and spoons to devour the cake I made, he didn’t walk until he was 20 months old and only said a few words by his second birthday.

By the time he was 3, it was evident his behavior was different than his peers and his social skills were awkward.  After a series of tests at University of Iowa Children’s Hospital, the doctors determined he had PDD-NOS. They said his case couldn’t be classified as Asperger’s because his speech was so delayed. This irritated me because what did they know about him or his speech after only a few hours?

Although I was in denial, I did agree to speech and occupational therapy. My husband, Jeff, has always been better equipped to handle Sage’s issues (he’ll be a great special education teacher once he complete his master’s degree this fall). It took quite a bit of persuasion from Jeff for me to agree to put Sage in special education preschool in 2007. In my mind, he was just a little behind and didn’t belong in that class.

But the individualized attention was good for him and now he is in kindergarten – on schedule. He is mainstreamed with several special education teachers working with him throughout the day. He is extremely intelligent – he has known his letters and numbers for some time now and can tell you the capital of any state. However, his inability to focus is detrimental to him and his classmates.

A couple of months ago we took him to our general practitioner for an evaluation. It is obvious to anyone that Sage has Attention Deficit Hyperactivity Disorder. One of the most common treatments for ADHD is Ritalin, a stimulant. After three days and a minor increase in the dose, Sage became aggressive, hitting his head against the wall and taking swings at teachers and us. The Ritalin was stopped immediately.

Today, at the referral of our general practitioner, we took Sage to a child psychiatrist for further evaluation. Doctor appointments or any activity that requires waiting are always a challenge because of Sage’s hyperactivity. He is usually the loudest, most active child in the room and today was no different. I do get tired of the perceived dirty looks but I realize I’m probably more sensitive to it than I need to be.

Once in the doctor’s office (yes, there was a black leather couch), I was still tense about Sage bouncing off the walls and touching everything. He was in full throttle, which was good for observation. The doctor asked us questions and watched Sage play. At one point, Sage stopped what he was doing and realized we were talking about him. The look on his face nearly broke my heart.  He may be autistic, be he is very sensitive and empathetic.

Sage playing piano at Grandmas at Christmas 2008.

Sage playing piano at Grandma's at Christmas 2008.

The doctor concluded that yes, he does have PDD-NOS and is still not verbal enough to have Asperger’s. He also has ADHD like we suspected. But because he also has anxiety, she said, stimulants like Ritalin have an undesired affect on him. She suggested Strattera for his ADHD. She also suggested eventually putting him on Prozac, an anti-depressant. Again, my heart sank.  I have been diagnosed with clinical depression and have been on a form of Prozac for nearly 10 years. Did I do this to him? When I was pregnant, all I was hoping not to give him was my crazy curly hair. Now he has my anxiety?

We told her about Sage’s intelligence and his love for music, especially the piano. She could tell he is a funny, sweet young boy who, with continued therapy, has great potential.

With time he should develop more skills and learn to focus on pace with his peers. When I asked her about eventual independence, she said that wasn’t outside the realm of possibility. That was music to my ears.


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