Frumpfighter

Posts Tagged ‘ADHD

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.

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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.

Several days into my son’s Ritalin regimen, we have halted it. The stimulant, commonly used to treat Attention Deficit Hyperactivity Disorder (ADHD), is supposed to help with focus and concentration.

Unfortunately with Sage, it did the opposite. He is usually a chatterbox and busy body but this magnified everything. He talked louder and more continuously. But the worst trait it brought out was agressiveness, something that has never been an issue with him.

After doubling his dose this morning (at 6 years old he’s 4 feet tall and nearly 60 pounds), he threw a fit while entering school, screaming and hitting his head against the wall. When his dad tried to calm him down, Sage hit him. When one of his teachers tried to calm him down, he pushed her away.

My husband called the doctor who said to discontinue the Ritalin and take Sage home immediately. It should take about six hours for it to get out of his system. We have been referred to a child behavioral specialist for more testing and possibly a different medication.

Ritalin has done good things for many children and adults. But for some reason, it wasn’t what my son needed. I can tell he is already feeling back to normal. He wants to go back to school and see the teacher he pushed away this morning. “I love her,” he says. And he does. That’s my sweet boy. We want to keep it that way.

Before I became a parent I was one of those who questioned others’ parenting skills and had no patience for less than little angels. All children were created equal weren’t they?

I also jumped on the bandwagon that diagnoses like Attention Deficit Hyperactivity Disorder, better known as ADHD, were just a crock and cop out for bad kids.  And prescription drugs like Ritalin were just a way for pharmaceutical companies to make a buck. I fell into all of the one-sided arguments about lazy parents who couldn’t handle their little brats so they sedated them.

My beautiful baby a day after he was born.

My beautiful baby a day after he was born.

And then in November 2002, five weeks before my due date, I became a mother. Sage Jeffory Holmes was the most beautiful baby I had ever seen. Yes, he was a little yellow-orange due to jaundice and had a minor eye infection, but he was perfect in every way to me.

 Within a few months it became evident he wasn’t developing on pace with children his age. Eventually, he rolled over, sat up, talked and walked. All of these milestones were way behind, but it was a major accomplishment when each one finally happened.  

When we took him to events like Easter egg hunts, kids’ events in the park and even trick-or-treating, it became more evident he didn’t have the same interest or abilities as other children. He liked to do his own thing. Rather than playing with the other kids, he would rather look at the air conditioner. When he got stuck on something, it became an obsession – like air conditioners or fans.  He didn’t engage in conversation, but rather talked about his current obsession.

After testing and evaluation at the University of Iowa Children’s Hospital in 2006, he was diagnosed with Pervasive Development Disorder – Not Otherwise Specified, or PDD-NOS, which falls on the autism spectrum. I’ll never forget when we were leaving the clinic after a long day of testing, one of the nurses said to me, “He’s a handful. Good luck, you’ll need it.” Gee, thanks.  I was hoping for help, not luck.

Through all of his developmental delays and social difficulties, it has been evident he is a sweet, intelligent young boy. He learned his letters and numbers at a rapid rate. He memorized all the states and capitals and could point out any of them on a map. Even Montana. He loves music and has taught himself how to play piano. Once he hears a song, he plunks it out on one of his electric keyboards.

Sage composing a song on one of his keyboards.

Sage composing a song on one of his keyboards.

So, it was never a question of whether he would attend school on schedule. Last year, he was in special education preschool and continued to learn basic skills. This year he is mainstreamed into kindergarten with the help of several special education teachers. He is still learning at a strong pace, but his inability to focus and stay on task is interrupting his class and his own learning.

We took him to the doctor last week for another evaluation and we all agree he more than likely has ADHD. The doctor explained to us how Ritalin works, possible side effects, and the possibility it might not be effective given his other delays. But we’re going to give a shot. If it will help him focus and have a more productive life, we can’t deny him that because we might be criticized because Ritalin is not popular with everyone. Because in the end, it is not about everyone else or his teachers or parents. It’s about him.


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