Friday, June 07, 2013

Special Needs Spotlight: Violet





Hello, my name is Jennifer. My husband Collin and I live in New York City with our two children,Violet and Simon. I am a stay at home mom and Collin works as copywriter at an advertising/branding agency. We met each other through mutual friends, married and decided to call this amazing city our home. Which is where we met Miggy and her wonderful family!  Violet was recently diagnosed with Sensory Processing Disorder (SPD).  If you’re like us, you may have never heard of SPD.  It is a neuro-developmental disorder that exists when sensory signals don’t get organized into appropriate responses.  A person with SPD finds it difficult to process and act on information received through the senses, which creates challenges in performing countless daily tasks.  Motor clumsiness, both fine and gross, behavioral problems, anxiety, depression, school failure, and other issues.  I am honored to be able to share a little bit about our experience with this disorder with you.    

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Miggy:  Can you take me back to the day you knew something was 'off' about Violet's behavior and then the day she was finally diagnosed?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Jennifer:  This question is hard because there wasn’t really any one specific day, it was more of a build up of behavior that we noticed over time that was causing us concern.  But if I had to pinpoint when we started to become aware of her development, it was around 10 months.  At 10 months when Violet still wasn’t showing much interest in crawling, struggled to eat solid food without gagging, rocked nervously anytime she sat down I began to wonder what was going on. I used to ask myself: “She’s a baby, why was she so anxious all the time?” As Violet got closer to her 2nd birthday, it was clear that she excelled in some areas like communication and imaginative play but really struggled in other areas: fine motor skills, some gross motor skills, and most noticeably her emotions/reactions (very cautious, withdrawn, overly sensitive to noise, taste and smell, extremely picky eater, low energy, and epic tantrums).
           
I think instinctively as a parent you know when something just isn’t right and I pushed those feeling into the back of my mind for a long time.  Also, it’s important to remember a lot of this behavior is common in many toddlers so there wasn’t anything alarmingly wrong in our eyes.  So we just kept living our lives and hoped she would improve.  Of course she didn’t and around 3 1/2  it became clear to both my husband and I that Violet was unhappy and struggling.  She was evaluated by a developmental pediatrician and his recommendation was occupational therapy (OT). Violet meets once a week with an OT in our neighborhood and it has proven to be a very valuable experience for her.  In just 3 months she has made some amazing strides.  Now that we have a name and some insight into what it going on with her it has been very eye-opening. We finally feel like we have some answers as to why she reacts to things the way she does. Instead of being frustrated with her we know what’s going on and how to help.



Miggy:  Explain how Violet's specific special need affects your day-to-day life?  
           
Jennifer:  Before we started seeing an occupational therapist, about 3 months ago, our days could be pretty challenging.  Violet rarely wanted to go out and play at the playground.  She had many paralyzing fears which included: dogs, the wind, pigeons, crowds, the cold, loud noise,  not to mention her issues with food, smells( even good smells were overwhelming), clothing (tags, long sleeves, pants, tights, socks, underwear), touch( getting dirty, sticky things).  We would spend most of our day in doors where she felt comfortable.  Violet still prefers games where she can retreat into her own imaginary world, often reenacting episodes of her favorite shows or books, to the exclusion of everyone around her.
           
Since we started with OT, all of her sensory defensiveness issues are being addressed with Sensory Integration Therapy Techniques as well as Therapeutic Music listening sessions on a daily basis at home and weekly in OT.  The biggest improvement in our eyes is that she is actually able to really enjoy herself now.  She can play at the playground or in the sand and dirt and not become panicked.  She can voice her frustrations in words rather then scream and cry without any explanation.  She has come out of the shell she has been hiding under for so long and it’s so satisfying as a parent to witness it.  She is also coloring a drawing which is one of her biggest challenges.  This is not to say that there aren’t any bad days anymore. Because there are.  But we are so proud of her and pleased with her progress.             

                                                                                           
Miggy:  What are the biggest worries you face for Violet?    
           
Jennifer:  I think our biggest concern for her is how she will do in school both academically and socially.  Because she is behind in her fine motor skills we don’t want her to become frustrated or loose confidence in her ability to learn because some things may be harder at first.  Which is why we have been so pleased with the work she has been doing in OT.  And we also don’t want her to be teased or feel isolated by her peers in the class room.  I think early intervention  for kids with SPD gives them the best chance for fully overcoming their sensory obstacles and I feel confident that Violet will be able to excel in school now.


Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  I'm particularly curious how this plays out with a child who's needs are not obvious from the outside and when other people may think she's simply exhibiting 'bad behavior.'   
           
Jennifer:  This is a good question because like you said from the outside people would never know Violet has SPD just by looking at her.  But those who know or have observed her in certain situations will note her quiet demeanor, her nervous “rocking” habit, and her over-sensitivity to things.  But I think my biggest concern is that when we are out in public and she has a total meltdown over something small like not getting to push the button in the elevator that people will think she is a spoiled/ill mannered child.  Which she may be a bit spoiled, she is our oldest after all, but that is not the reason she can’t calm herself down.  And it’s hard in those situations but I usually try to remove her from the “scene” and let her work it out.  I think kindness and patience is the best way to approach interacting with a child who has SPD.  Don’t be offended if he/she doesn’t respond right away when you say hello.  Or if he/she runs to hide behind a tree at the sight of your dog walking past them.  And maybe think twice about judging the parent who’s kid is going ballistic in the mall parking lot.  Maybe they’re trying their best to control situation, you just never know...


Miggy:  I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son/daughter? 
Jennifer:  Simon is such a sweet, tender guy.  He loves his older sister so much.  They are close friends and he wants to be with her, doing what she is doing all the time.  His personality is very different from Violet’s in that he gets into everything, all the time!  He is so curious and seeks physical activity.  He thrives outside at the playground.  They are close in age, 27 months apart. I planned on having my first and second 3 years apart but when Violet was 18 months we both really felt like it was time for another baby.  And I truly believe that Simon was meant to come to our family to be a little companion to Violet, to help and love her.  Of course they fight and squabble as all siblings do.  But it brings me such joy to watch the two of them play and grow together.


Miggy:  Do you have any advice for a mom who may suspect that her child has a sensory processing disorder?    
           
Jennifer:  If you suspect that your child may have SPD I would highly recommend talking with your pediatrician about it.  I will also list a few different websites to check out with helpful information. SPD is large umbrella term used to describe the disorder. There are a few different patterns and subtypes that fit within the umbrella of SPD.  So Violet specifically struggles with sensory modulation and motor planning where another child may be fine with modulation but has trouble with sensory discrimination. Our OT recommended this book by Lucy Jane Miller called: Sensational Kids. It’s very helpful for anyone who wants to learn more about SPD.


Miggy:  Finally, what is the biggest lesson you’ve learned since becoming Violet's mom?   
           
Jennifer:  The biggest lesson for me is patience.  It’s something that I have to work on everyday. She is very sensitive to my mood or reactions to her behavior and she is constantly asking me if I’m happy.  And sometimes I’m not feeling cheerful but I keep trying to remind myself that she is looking to me to show her appropriate ways to deal with life’s challenges and if I'm yelling or I’m short with her, she notices and it affects her in a big way.  Sometimes it feels like a lot of pressure to be her role model but I’m her mother and I'm so lucky that I get to have that job.  The other thing I’ve learned is that constant, positive reinforcement is huge for her.  She wants to please us and the more we notice the little things she’s doing the more confidence she has. Collin is an amazing father and he’s so patient and kind with Violet.  Having a good partnership with your spouse is key to navigating the hard times. That I know for sure!

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Thank you so much Jen!  It's always fun to spotlight people I know in real life.  I also really appreciate this information as I've heard about sensory processing disorders for a while but didn't really know what they were.  Additionally, I think it's one of those things that could certainly use more awareness as many parents may not even know this is something they're dealing with and as you said, early intervention is key!  So thank you for educating us and helping spread the word.  And I really related with your final answer about needing to model appropriate ways to deal with life's challenges.  Even though my daughter's don't have SPD I know that's something I can be a bit hypocritical about sometimes...I can only image the added pressure you feel with Violet.  So good job mama!  

As always if you or someone you know would like to participate in the Special Needs Spotlight please email me directly, or have them email directly, at thislittlemiggy at gmail dot com.  I've received a number of emails lately--which is fantastic--if you haven't heard back from me please be patient!  I promise you will!

Have a great weekend!

12 comments:

  1. Violet is such a little cutie.

    Thanks for sharing this Miss Miggy. x

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    1. She is cute! Thanks for support FF.

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  2. Anonymous9:47 AM

    I feel bad for Violet her parents denial deprived her of such valuable early intervention...

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    1. I feel bad for people who judge others harshly and unnecessarily.

      Violets parents are obviously doing a fantastic job and she is a very lucky little girl.

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    3. Isn't it always interesting that anyone who has a judgmental/harsh comment doesn't feel confident enough in their own perfection to not be "anonymous"? Hmmm... says something, doesn't it?
      In no way did I sense any "denial" from Violet's loving parents that was beyond simply trying to sort things all out in your head as loving and concerned parents. It is clear that they want to help their daughter and are doing everything they can to do that! What a beautiful family! I just hope that Jennifer can ignore this particular "anonymous" commenter! Don't let their ignorance taint your positive experience here on Miggy's blog!

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    4. Any parent brave enough to be vulnerable about something that matters so deeply to them should be applauded and supported, never criticized. There is simply no place for that, especially here. You may not know them but I do and they are amazing. Their children lack for nothing. May all families be as strong as this one.

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  3. Anonymous10:40 AM

    If Violet's mom is reading: Has Violet ever had an eye exam? Some sensory or processing disorders can be linked to visual processing disorders. A behavioral optometrist might be able to add some insight to what her OT is already doing. Vision therapy and OT can go hand in hand! No judgement here :)

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    1. It's interesting you bring this up an eye exam because I had the same thought about a week ago! I've never heard of a behavioral optometrist before. I wouldn't be surprised at all if Violet has already developed poor vision since she's genetically pre-disposed to it. Both her dad and I wear glasses or contact lenses and definitely cannot see well without them! She has a well visit at her pediatrician soon so we will be sure to bring up her vision then, thanks for reaching out :)

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  4. Ciara6:40 PM

    I love love love love this! My cousin was born prematurely here in Ireland and always had certain issues and delays due to prematurity but it wasn't until my aunt and uncle moved to the U.S that he was diagnosed with SPD, cerebal paulsy and a few other things. I love reading about SPD as most people aren't too aware of it and we can feel judged about his behaviour and certain aversions when out in public. SPD is a challenge but it is also a part of the boy we love So it has to be embraced. Thank you so much Miggy and Jennifer! Violet is just gorgeous and I love that awareness can be spread!

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  5. I'm so glad to read about Violet's progress here! As a close friend and neighbor who is lucky enough to interact with this amazing family on a regular basis, I can add that Violet is a wonderful little girl with terrific parents who are all doing a great job facing a challenging situation. We love them so dearly.

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  6. I am so glad to read about Violet's progress. My son initially had many of these symptoms which we thought were a result of having open heart surgery at 5 days old to correct CHD's. I know how frustrating it can be in the beginning to get a dianosis. Kudos to you for following through and getting some answers and a diagnosis. It takes a lot of patience and time as no two children are the same no matter the diagnosis! Sounds like you are doing an amazing job. Also, we have noticed huge improvements in our son since we had another baby. Like you mentioned, it is so rewarding to watch them play together and help each other...and challenge one another. Wishing you & your family all the best, Kristen

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