I’ve debated writing a post like this for a long time. I’m not sure if I was embarrassed, or if I didn’t want to overshare something my daughter might be upset about later, or if I just didn’t want to get into it. So I didn’t write it.
But as the months have gone by and I’ve talked about it more, and people have come to me with questions and help for their own kids, I’ve decided it’s time for this post. Because it is nothing to be ashamed about, because I think Holdy would always choose to help others, and because I kind of just need to get it out now.
Most of you know Holdy from my posts, from her funny faces in my Instagram photos and her fashionista hashtag, #whatholdywore. You know that she is fun and vivacious and silly and creative and strong and brave. She lives life out loud.
But last winter, I started to realize that the size of Holdy’s emotions and reactions to negative situations seemed to be more extreme than other kids. She was frequently and easily frustrated. She would throw a tantrum on a dime: huge, Exorcist-style tantrums that could last for 45 minutes. I noticed that, as a tantrum was starting, she would rub her feet together–almost as if the emotion was fighting to get out of her. One time at school, she had kicked her shoes off during a tantrum and rubbed her feet together so vigorously that she blistered and bled. The physical aspect of her emotional reactions really scared me.
There was also the defiance, which was off the charts–even for a threenager. Extreme excitability and impulsivity. Bedtime was a nightmare. We were getting some negative reports from school–reports that Holdy was bullying other kids, specifically picking out the meeker kids that she felt she could control.
I felt like I was always walking on eggshells, not sure which Holdy I was going to get. Everything came down to picking my battles–was this “lesson” worth the 45 minutes of horror that would ensue? I hate to say this, but I dreaded picking her up from school. I could feel my blood pressure rise every time I pulled into the parking lot. I felt like a failure.
People tried to reassure me, “she’s just three;” “all preschoolers are like that.” But I knew there was something more. So I made an appointment with her pediatrician and I started scheduling sit-downs with her teachers. And together we worked out a plan.
Holdy and I started attending family counseling in March. These sessions mainly consist of me airing my grievances while Holdy plays with the counselor’s toys. We work on behavior goals and tactics for me to try positive parenting and keep Holdy on track. Honestly, it’s more like parental counseling for me and I’m fine with that. I also took a Positive Parenting Workshop in the spring offered by Holden’s school.
In July, I took Holdy to see Dr. Susan Mayes, a pediatric psychologist at Penn State Hershey, for an evaluation. In advance of her appointment, I, her dad, our counselor and her teachers filled out extensive questionnaires about Holdy’s behaviors. The appointment consisted of 45 minutes of alone time with Holdy and the doctor, while Holden played games that were actually various tests. Afterward, they brought me in for the recap and diagnosis.
And so I got the official word on what I had pretty much known all along: Holdy has attention deficit hyperactivity disorder combined type (ADHD) and oppositional defiant disorder (ODD), often associated with ADHD.
I was a bit taken aback to learn that Holden was also diagnosed with dysgraphia, which is a difficulty with handwriting and letter recognition. According to the tests she took, Holdy’s IQ is in the “gifted” range and she did very well with puzzles, reasoning and vocabulary… but her performance on writing skills and letter recognition were very low, which led to the diagnosis.
I had just assumed she had terrible handwriting because she was four, but once I learned about the disorder, things came together. Holden doesn’t write her name in a straight line–sometimes she writes it like a box. Some of her letters are written backwards. Dysgraphia is a graphomoter disorder that will require a lot of remediation and accommodations.
So there it was. Out in the open and down on paper. Verified.
I felt… relieved. Relieved that this wasn’t all in my head. Relieved that I wasn’t just a terrible parent who doesn’t know how to control my kid. Relieved that there was help on the way.
But I also felt sad. Sad knowing that this is something Holden can’t control and doesn’t understand. Sad that this is something she will struggle with her whole life. Sad to learn that kids with ADHD and ODD frequently deal with frustration, low morale, and poor self esteem because they’re constantly being scolded.
So again, we worked out a plan. We’ve started wraparound services and Holden has a therapist who works with her at school a few hours a week, helping to redirect her when she sees Holden being triggered. Soon we will also have a therapist come to our home a couple of hours a week in the evening.
The teachers and leadership at Holdy’s school, York Day Nursery, have been amazing through this entire process. They truly care about Holdy and want to help her succeed. We’ve been working together to make accommodations for Holdy during her school day, including:
- a behavior plan and reward system to promote attention and compliance,
- cues, redirection, repetition, and rehearsal,
- frequent and specific feedback,
- limited distractors,
- breaking tasks into small, manageable segments,
- preferential seating near the teacher and between peers who are attentive,
- subtle signal system between Holden and her teacher to be used when Holden is off task,
- hands-on activities that allow for active involvement,
- computer learning activities (because children with ADHD are generally attentive to and successful with
- computer educational programs),
- frequent communication between parents and teachers.
When Holden starts kindergarten, she’ll require an Individualized Education Program, or IEP, to help her be a successful student. If we decided to try medication, we’ll be able to do that once she turns five.
For my part, I’ve been trying very hard to work on my patience, to try to praise the good more than I’m pointing out the bad, to keep her on task, to not put her in situations where she’s set up to fail. It’s not always easy.
Last week, as we were hurriedly driving away from a family dinner out that ended early (and badly), Holdy was writhing in her carseat, trying very hard to use her coping skills and deep breathing to ward off a tantrum. She told us, “I want to be good, but it’s so hard.”
So, we’re figuring it out. No day is the same. I often regret the way I react or handle our interactions. I still often feel like I’m failing her.
Sometimes when I’m feeling bad about the situation, I return to Dr. Mayes’ assessment, which included the line:
Holden enjoys a warm and affectionate relationship with her mother (who accompanied her to today’s appointment) and was happy to be re-united with her after testing. Holden’s mother interacts with Holden in a very loving and therapeutic manner and uses excellent behavioral strategies and accommodations.
A photo posted by ohbotherblog (@nomiddlenamemeg) on
I also remind myself of the assessment summary:
SUMMARY: Holden is a very likable 4-year- old with superior verbal and nonverbal intelligence who has ADHD, oppositional defiant disorder, and dysgraphia (difficulty with handwriting).
She’s going to have some challenges in her life, but it’s my job to help her get through them so that she can let her goofball self shine.