Stepping out of the Box

Please note: This is a LONG post, sorry!

I love this girl so much! She is my jam. She’s growing up so fast and I can’t believe that she’s going to be 4 in a couple months. Seems like just yesterday I was a sleep deprived, nervous, new mom trying to figure out how to take care of this fragile little baby. She is my first born, an amazing experiment in parenting of sorts. And so far I think we’re doing ok. No major screw-ups yet. We’re saving up for her teenage years, ha!

I’ve been writing this post in my head for a while now, trying to figure out what to say, how to say it since we’re in the midst of understanding and navigating our way through an uncharted chapter in Violet’s life right now. Some of you may or may not know that she has recently been diagnosed with something called Sensory Processing Disorder (SPD). If you’ve never heard of this before, you’re in good company. This is completely new territory to Collin and me and we’re still learning more about it everyday. There is alot of information out there but I’m going to try to whittle it down into the basics.

SPD is a condition that exists when sensory signals don’t get organized into appropriate responses. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, both fine and gross, behavioral problems, anxiety, depression, school failure, and other issues. SPD is most commonly diagnosed in children but there are adults that suffer as well. Some kids are overly sensitive and over-respond to sensations like, smells, loud noises, light, wind, clothing(i.e. tags, fabrics, types of clothing), food(i.e. textures and smells). Violet fits into this category. Some kids under-respond to sensations and instead of being hyper-sensitive, are on a kind of overdrive and seek out sensory experiences inappropriately.  Similar to ADHD or Autism, SPD is a neurodevelopmental disorder and is relatively new and there is unfortunately not enough research being done so the exact cause is not known. However the causes of SPD are suspected to be both genetic and environmental.

I think that we have always known that Violet was a little “different” from kids her age. She has always been a nervous/anxious child, slow to adapt to changes in her surroundings or routine, overly cautious, very picky eater, and slow to make friends. Our pediatrician had been asking us to consider having her evaluated by a developmental pediatrician for a delay in her fine motor skills.  We put it off for months thinking that she would catch up in preschool and that there wasn’t much cause for concern. But as the weeks and months passed we began to feel like she was getting worse instead of better.  She was refusing to play at the playground or even go outside at all. She could barely even hold a crayon, let alone color or draw with it. She was restricting herself nutritionally so much that I was concerned she wasn’t getting enough to eat. Pants, socks, tags, strong smells, wind, rain, cold, snow, and dogs were almost unbearable.  She spent almost every waking minute living in her own imaginary world, uninterested in interacting with us or friends who had come over to play.

So we decided to take her to a developmental pediatrician to see what he said. The conclusion was that she is behind in her fine motor skills and struggles with sensory perception. He recommended that she be seen by an Occupational Therapist(OT) to work with her on her sensory issues as well as improve her fine motor skills. So we have been taking her to an OT in our neighborhood once a week for the past 6 weeks or so and although it is a slow moving process, we have definitely seen some improvements.

For example she is holding and coloring with crayons and not getting frustrated, this is huge! She’s actually enjoying herself :)

What’s most interesting to me about her improvement with her hands is that the OT has not been working with her at all on handwriting or drawing. She has been strictly focused on working through her sensory processing problems. She says that her over-sensitivity is causing her to be behind in her fine motor skills and that once we have fully addresses the SPD that her hands will improve on her own. I have been very skeptical of this theory but as you can see from the photo, there is definitely something it.

She is a little more willing to try new things like riding a trike, even if it’s hard. However she is still convinced that she can’t do things most of the time, but we’re working on changing that perception daily.

She loves, loves , loves her little dance class! Her teachers are so kind and patient with her (she’s the one in the pink leotard and gray tights, ha!)

We have lots of exercises and deep-pressure protocol therapies that I work on at home daily to help with her SPD. It’s a lot. And somedays when she doesn’t want me to work with her it seems like too much. But we have seen a difference and that give me the motivation to keep going.

There are a few good resources to look at if you’re reading this and think it sounds like your child, someone you know, or you’re just plain curious :)

This book has been great:

These websites have also been very helpful:

1. SPD Foundation

2. STAR Center Sensory Therapy Research

3. Our Occupational Therapist, Loren Shlaes also recently published an article on PediaStaff.com about addressing SPD from and OT’s point of view.

Now that we have a name for what is going on with Violet it seems like things are finally making sense and now we can move forward with a plan to help her succeed in life. I spent a lot of time doubting and comparing her to other kids and wondering whether or not there was a “problem” with her. And she is different then other kids and that’s ok because she’s also Violet, our sweet, happy girl and we are so proud of her and feel privileged to be her parents. She is constantly teaching me how to be more patient and understanding as we work together everyday. I hope that by sharing a little bit about our experience with a child with SPD that it might help someone else out there who is maybe searching for answers themselves about their own child or someone they love. I’m going to try to make a bigger effort to write more posts about her progress as we continue to attend OT sessions. Please feel free to comment to post questions if you have any. And give yourself a pat on the back for reading through this hugely long post, yikes!

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9 Responses to Stepping out of the Box

  1. Whitney says:

    I am so glad to be able to learn more about Violet’s world. You know how much we love that girl – Ellie still talks about her now and again. I hope the OT continues to be beneficial and I look forward to learning more. The look on her face riding that tricycle is priceless. Hope to see you guys soon!

    P.S. The photos in the header freak me out by how much Simon has grown. He’s huge!

  2. Ciara says:

    You’re doing a great job. Violet is lucky to have devoted patient parents like you. I feel lucky to have excellent parental friends to lean on!

  3. Debi says:

    It is so good to share things like this– for others to understand and for Violet to be better understood. I have 2 affected nephews– one with SPD and another with SPD as a symptom of Aspberger’s– so I am a little familiar with how it can affect kids and how much therapy can help. I’m happy that Violet is making progress. I always think of her and all the little girls that we left in the city as the BFFs Bethany should have had!

  4. Jen Bennion says:

    Thanks for your comments and support ladies! I’m happy that I still have a few faithful readers out there since i’m such a terrible blogger these days. Debi and Whitney, miss you guys and your cute kids! Ciara, you know how I feel about sweet Jay :)

  5. Katie says:

    I’m so happy you shared this. I’ve heard you talk about it here and there but I loved hearing about all the intricacies and about the success you’ve found so far. Violet is the sweetest and I have no doubt she has an amazing life ahead of her! I also know that in situations like this, when you feel alone and overwhelmed with a diagnosis, it helps tremendously to be vocal and share your story. You’re doing a great job, Jen! Know that we support and love you and your family!

  6. Aunty Caits says:

    Violet is my sweet girl, and I am so proud of the progress she has made. She is so special to me, and the complete love of my life. Ever since she was born, I have had a special bond with her! She is an amazing little girl, and lucky to have amazing parents.
    Interesting to read more about the disorder. I am so glad the occupational therapy is working.
    That pic of her dancing just made my morning! Oh she is still the precious little girl she has always been!

    Love you guys!

  7. Elaine says:

    I love that Violet girl. She is so lucky to have you for her Mom. xoxo

  8. Lynn says:

    Just happened to check in to your blog. Nobody writes much any more so I haven’t been very good about looking. I was real surprised to hear about your concerns and Violet’s diagnosis. I know how concerning it can be when you find out your child is anything but perfect. But so glad she’s progressing with the help. I’m sure she’ll learn to deal with it and she will flourish as she grows up. Such cute pictures! Thanks for sharing.

  9. Erin says:

    Have you thought about sharing your story on Amy Webbs blog as well? I think others may really gain from what you’ve learned, especially since its all so new and there isn’t a ton of research available yet. You are writing your family’s story as we speak, and it’s a beautiful one. Violet is in great hands!

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