Progress! A Violet Update

*This picture was taken on a recent trip to the Central Park Zoo in the Tisch Children’s Zoo.

*Be aware, this is another longish post, sorry,  feel free to skip sections*

Its been a few weeks since i’ve done an update on Violet and she has made some major strides and i’m so proud of her! While we were at the Zoo recently,  she was playing in one of the giant turtle egg shells and peaked her head out, looking around for her friends. It reminds me of the journey she has been through recently with her SPD and really symbolizes her “coming out of her shell” and really being able to fully enjoy life.

Her OT(Occupational Therapist) Loren Shlaes, has played a key role in helping us to better understand and help Violet work through the neurological issues that drive her over-responding and anxious behavior using sensory integration therapy techniques.  Loren recently published an article that explains what can cause a child to be anxious and what she looks for during her evaluation. Click here for the full article. These are a few of the issues Violet specifically struggles with as described by Loren:

-”A poorly integrated Moro, or startle response:  The Moro reflex is what propels the baby to extend its limbs and take its first big inhalation of air when it emerges from the birth canal.  It is present and active in the nervous system for the first few months of life, and then it integrates, meaning it is still present, but does not respond to normal sensory experiences.  If it is still active in the child’s nervous system, however, the child’s body will respond to most daily events by startling and flooding him with stress hormones, like adrenaline and cortisol.  This tends to keep the child in a chronic fight or flight state.”

-”Inefficient, shallow, rapid respiration:  Many children with postural challenges tend to hold themselves upright by fixing their ribcages, which locks up their respiratory mechanisms.  Even if you’re not anxious, you can breathe yourself right into a fight or flight state with rapid, shallow breathing.”

-”An active spinal Galant reflex: The spinal Galant reflex causes the hips to wiggle involuntarily when there is any pressure or sensation to the low back.  It causes the low back area to be highly sensitive. Children who can’t sit still, who are constantly wriggling or running around in circles, and who complain bitterly about wearing underwear or pants with labels or tight waist bands, may be struggling with a poorly integrated spinal Galant.”

-”Tactile defensiveness: Their skin is continually misinforming them about what is going on around him, putting him on high alert, and telling him that his clothing is too scratchy, classroom materials are disgusting, and other people are threatening his personal safety.  I imagine the child feels a little extra crazy since no one else seems to share his perceptions.  Oral motor defensiveness, which can be caused by weakness and incoordination in the child’s oral musculature as well as overly sensitive lips, cheeks, and tongue, prevents the child from taking pleasure in his food and makes meal times a trial.”

-”Auditory defensiveness: A child who continually responds to most ambient sound with, “What’s that?” or who can’t function in a noisy environment, is reacting to sounds that our nervous systems would not even register by flooding the child with stress hormones and alerting him out of his focus.  An auditory defensive system often can’t properly filter or discriminate relevant auditory information, which means that the child can’t pick out the teacher’s voice from among the others in the classroom.  He have to continually look at the other children to get visual cues to see what he should be doing.”

-”Poor core stability, caused by delayed postural reflex development: Children who don’t have a strong, sturdy, reliable, stable relationship with gravity are understandably anxious. Fear of falling is hardwired into the human nervous system.”

If you have known Violet for a while, the descriptions of these neurological issues may sound familiar in observing her behavior, i.e. her rocking when she’s anxious or nervous, inability to handle noisy environments,  epic melt downs, disinterest in playing at the playground, and poor appetite to name a few. I’m so pleased to say that all of these underlying issues have been addressed in therapy and many of them have been resolved! Her spinal galant reflex is gone, her moro reflex has been integrated and her tactile defensiveness has drastically improved due to the deep pressure protocol brushing technique that we have been using. We are currently focusing on improving her auditory defensiveness, core stability, postural reflex and her shallow breathing.

Since we started with OT in March, Violet has come a long way! It’s really amazing to me how resilient and receptive she is to learning and playing these days now that we have these sensory defensive issues under control. Loren has introduced her to therapeutic listening and she has been doing the program for almost two weeks.

Here she is in the middle of a listening session. The headband is her favorite part :) It’s only to keep the headphones from slipping though, ha!

She listens to specially enhanced music on an MP3 player with headphones for 30 minutes, twice a day, with at least 3 hours in between each session. She listens while she’s playing, coloring, or eating a meal. But not while watching a show or sleeping.  In order for the therapy to be most effective, the listener should be engaged in an activity. Results from Therapeutic Listening have shown improvement in the following areas(this is not a comprehensive list):

-Enhanced ability to focus

-Ability to make transitions or changes in routine easier

-Regulation of mood and energy level (overall a happier child, less irritable)

-Increased participation in and exploration of playground equipment (swings, slides,  climbing structures)

-Praxis and motor planning (coming up with an idea, planning and then completing the task)

-Decreased fear of movement and fear of heights

-Improvement in fine motor skills including handwriting

-Reduction in sensory defensive behaviors (abnormal responses to sensory stimuli like sounds, touch, taste, pain)

If you’re interested in learning more about Therapeutic Listening, click here. One of the most interesting things about the listening therapy, is that Violet’s rocking has dramatically decreased. It’s pretty incredible. But I think the best part of participating with Violet in her therapy is watching her change and improve daily. She is truly happier! She is not a walking ball of stress anymore which is huge. 3 year olds should be happy, playful, joyful and full of life, not anxious and withdrawn. We are so proud of her and are anticipating all the great things she has to look forward to.

Posted in Family, NYC, SPD/Special Needs | 3 Comments

Happy “Women’s Legacy Day”

20130512-223513.jpg
I love these two so much my heart feels like it might explode! Words cannot express how happy I am to be their mom. Even on days when it’s hard and I’m sure that I’ve scarred them for life I still wouldn’t trade it for the world. A woman in my ward calls today “Women’s Legacy Day” and I loved that. She isn’t married and doesn’t have children of her own but, she loves the children around her and loves the women in her family and her friends. She has found a way to make today meaningful for herself and she is fully embracing it. And I say, good for her :)
Happy Mother’s Day to my mom, my mother-in-law and to all women! Because you don’t have to be a mother to impact the life of a child.

*Violet has made some amazing strides in her therapy and I cant wait to share them with you. Stay tuned for an update this week!*

Posted in Family, SPD/Special Needs | 1 Comment

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!

Posted in Family, SPD/Special Needs | 9 Comments

Where does one begin?

So I have been debating whether or not to even update the blog since it has been so long since the last post. Does anyone even read it anymore? I’m pretty sure anyone who did has given up on seeing anything besides Collin and Violet posing with our Christmas tree.  But i’ve decided to give it another go and see if  I will get back into the groove of blogging. To be honest, besides not having much time to devote to it, i’ve also lost interest in the blogging world as a whole. Not sure why. Maybe Instagram and Facebook are to blame. I still read a few blogs here and there but i’m definitely not as much of loyal follower as I have been.

I have no idea where to begin. How do I condense our lives for the past 3 months into one post? I think the easiest(and fastest) way is to explain it in pictures. So without further adieu here is what’s been going on in our little world according to our iPhones:

Family photo-Fall 2012

Violet’s first Ballet Recital

Our First Holiday Season with our “Elves on the Shelf”. Violet named them “Alpha and Jonah”.

In the infamous line waiting to see Santa at Macy’s Herald Square.

The group shot(minus Collin, we missed him, he was on his way from work but didn’t make it in time). I was amazed that neither of my kids were crying! This was a first for us.

Chris and Cait. We’re so happy that these two came to spend Christmas with us.

Classic Rockefeller Tree pictures.

Gingerbread House making/decorating. 

Someone took matters into his own hands and decided that it we wouldn’t give him any runts he would pick them off the house himself. He continues to get himself into trouble on a daily basis. Some things never change.

First Sunday in Sunbeams. She’s growing up way too fast!

Our new couch arrived in January. Merry Christmas to me!

15 month appointment(he was technically 16 months, minor details right?). 95th percentile for weight and height. What can I say? The boy has a healthy appetite. Oh, and i’m pretty sure Violet’s thighs are thinner then his. 

Riding the A with a couple of her best gal pals. Love these little girls. Sorry it’s blurry. No one wanted to hold still :)

Bedtime stories. Simon never. sits. still. This is rare folks, very rare!

Collin continues to be one of the world’s greatest dad’s. He and Simon enjoyed playing in the snow after our legit snowstorm a couple weeks ago. 

However, this one did not. She didn’t want to wear boots and convinced herself that she was in a bad mood. Whoever said the terrible twos were bad might now have had a 3 year old. The emotions run high in this one and I would be lying if I said I wasn’t getting nervous for her teenage years. 

Valentine’s Day was a success over here this year. We decorated sugar cookies and Violet loved exchanging her Valentine’s with all her friends. Collin spoiled me as usual with flowers and Ghirardelli chocolates in a heart shaped box. Those didn’t last long around here!

So that’s a brief summary of the goings on around here. We are counting down the weeks until spring. This is the worst time of year. Thankfully Easter is early this year, hopefully it will bring some warmer weather our way. We are so looking forward to long days spent with friends, outside, exploring the city and enjoying our favorite playgrounds again. Spring and Summer in the city is the best! Until next time, stay warm friends.

Posted in Uncategorized | 1 Comment

O Christmas Tree, O Christmas Tree

Thanksgiving weekend we drove up to Shelton, CT to the Jones Family Farm to cut down our Christmas Tree! I volunteered to watch our good friend’s Volvo for the week so we had the perfect car for Christmas tree adventure. It is a lovely little Farm about an hour and a half outside the city. Our next door neighbors and good friends told us about it and i’m so glad. Every tree is $63 no matter the size. Which was a decent price since we paid about $75 last year when we bought one on the street corner here, just a few blocks away.

Don’t let Violet’s face in this picture fool you, we had the best time. It was a beautiful day, 52 degrees. Perfect for picking out our tree. Ever since we watched The Lorax a few weeks ago, she has developed a new fear of trees getting knocked down. So we were a little concerned that the whole cutting down out own tree ourselves aspect of this trip might send her into a melt-down :) But we talked about it on the ride up and she seemed to be ok. Once we got there she was very excited about all the trees. When we found ours, she was still a bit nervous that we were hurting the tree by cutting it down(hence her face in the picture)but she definitely wanted to take it home so she decided that it was in fact ok to let Collin saw away at it. Here are a few photos from the day:

Violet, overseeing the tree cutting process.

Simon enjoyed walking around, exploring the great outdoors.

Once the tree was cut down it was time for a quick picture and then back to the car.

There was a special machine that they pulled each tree through to wrap twine around it to get it ready for the trip home!

Then Collin channeled his inner “Clark Griswold” as he tied the tree to the old station wagon :) We made a quick stop at Wendy’s for lunch and then it was time to head home.

We wasted no time stringing up the lights and trimming the tree. We got to work as soon as we got home. As you can see Violet was and is still inlove with her tree. She reminds me every morning that the tree is thirsty and that we need to get it some water. 

This is the best time of year and we’re so excited for our first Christmas in NYC. This will be Violet’s first year where she is old enough to really experience Christmas for herself. It’s magical to see the traditions of the holiday season celebrated through the eyes of a 3 year old. The count down has begun!

*sorry about the foggy quality of the pictures. I’m suspicious that my iPhone camera has a scratch on the lens :(

 

Posted in Family, NYC | Leave a comment