growing up holdy

6

07.10.16

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.

 

Someone’s starting Pre-K at York Day Nursery today! #weefees #ohbotherblog

A photo posted by ohbotherblog (@nomiddlenamemeg) on

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.

Parenting a toddler @ohbotherblog

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.

growing up holdy @ohbotherblog

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.

image

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.

#whatholdywore @ohbotherblog

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.

 

Me and my +1. @susquehannastyle #BestofYork

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.

 

Born to be wild #weefees #yorkfair

A video posted by ohbotherblog (@nomiddlenamemeg) on

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6 comments :

  • Jim

    I myself was very much like Holdy. ADHD, ODD, and was often told I was “very intelligent”. I made it into adulthood without the proper care and counseling that is available to kids today. You are doing the right thing! Equip yourselves with the tools and knowledge to help her and eventually help her help herself. She will grow up to be a brilliant doctor, scientist, scholar, actress or whatever she puts her mind to being. She may be naturally gifted with skills. Thankfully for me, I was gifted with computers. It has allowed me to have a great career as a computer engineer even without a college degree. I will tell you from firsthand experience that the worst part of being ADHD is the feeling of failure. We aren’t the best multi-taskers and things do slip. Things started but not finished, relationship problems, sometimes problems at work or school with peers. She is young, and I pray that she doesn’t have the same kinds of problems I did. The services and treatments are all so much better today. When we were in school, the treatment plan was to take a Ritalin pill. That was the extent of it.

  • Nikki

    You are a wonderful person and mother Meagan! I am confident you will continually support Holdy in whatever way possible because that is what loving parents do! Whenever we as parents hear diagnosises from doctors such like Holdys, we initially take the defensive nature of ” what have we done wrong ” I speak from experience when my son was diagnosised from the Neurologist with a simple tic disorder. He was 8 years old and they said he would likely grow out of it! We dealt with numerous years of IEP evaluations. At first we felt ashamed as you had mentioned. His Tic disorder usually accompanied ADHD. So we constantly looked to teachers and doctors to offer their help. He never was diagnosised with ADHD but the constant Tic he dealt with, and by the way, continues to deal with now at age 21, never interfered with any of his many accomplishments throughout his 12 years of school! He was doctored every year for his Tic and we gratefully accepted every opinion offered. But the outcome every year was the same, he (and we) decided to never pursue any medical treatments! He decided at a very young age that he was different from his peers, fought through many different tics (head shaking, eye blinking, spitting, hand twiching) but never let his disorder define him! He always accepted any suggestions that might help, but has continually learned his own way of dealing with the tics. As Holdy rubs her feet together, Parker was ticing with unvoluntary movements to suppress his nervous system, like an itch you cant touch! How frustrating this must have felt for my son. I want you to know that Holdy has the best support system around…YOU…you are one hell of a mother Meagan! Although frustrating beyond belief sometimes…having to work through all this WILL make Holdy an even stronger young lady in the end! The struggle surely has made Parker a remarkable young man…being awarded the Principals Award his senior year of high school was truly one of my happiest AND proudest times ever…especially when all those years of school all I heard was…your boy spaces off in classs tics every which way and surrely has to have some type of learning disorder! Please know your struggles are shared by many and Holdy is only going to become loved by all who have the pleasure of working with her…I’m sure of that! Love to all!

  • Shelly

    I have been following your blog for awhile after finding you through alovelylark. I live in your same area and always admire how much you love our beautiful city of York and your dedication to its revitalization. I also am very impressed with how much you seem to accomplish with your life, career, and family. Where do you get your energy? I felt compelled to respond to this post, because your situation is EXACTLY where I was about 3 years ago with my oldest daughter. I used to videotape her meltdowns because I couldn’t get any medical professionals to believe me when I tried to describe their severity. We have left grocery stores, family parties, church functions, etc. with the whole family in tears because the outburst was SO intense! I feel your pain and believe me when I say I truly know how you have been feeling. I beat myself up over and over, trying to figure out where my husband and I went wrong. How could we have such a devil-like child? We finally got the ADHD/ODD diagnosis when she was 6. (It took her biting another student on the playground for someone to finally take us seriously!). I had known from the time she was 3 that something was wrong, but couldn’t get anyone to believe me. Once we received the diagnosis, we did start her on medication. What a difference it made! It took us several months to find the right medicine and dose, so if you do take the medication route as she grows older, have patience with it. We also got a second diagnosis of Autism Spectrum Disorder when my daughter was 8. I had always suspected this too, but since she is gifted, her intelligence often masked some of the common symptoms. My lengthy post is to say, hang in there! Take a lot of deep breaths and know that you are a good mom!! The fact that you are getting her the help she needs tells me that you are a great mom who loves Holdy very much. My daughter is now 9 and thriving in school. She has friends, lots of interests, and her teachers describe her as smart, funny, and a good student. We still use medication as well as cognitive behavior therapy, and social skills therapy, but it is all worth it. Our lives are so much better now than 3 years ago. My hope is that you will be able to look back when Holdy is 9 and be able to say the same thing. It’s not always easy, but take one day at a time!

  • Mary

    You’re an inspiration. What a brave post, and what a lucky girl Holdy is to have you as her mom. Thank you for sharing your family’s journey.

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