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Friday, June 16, 2017

What is Hypotonia?

What is Hypotonia?

My daughter, C, was two months old when she was first diagnosed with hypotonia -- or low muscle tone. This affects her ability to complete gross motor and fine motor skills.  Due to her hypotonia, her muscles are working overtime -- more than the average child.  

When people ask me what hypotonia is, I often respond with the simplest answer I know -- low muscle tone. "Hmmm..." they usually respond, and then the conversation moves elsewhere. Sometimes, they will follow up with, "So, her muscles aren't strong?" And then that is an even longer conversation; one that I still struggle to fully explain. In fact, that's the biggest issue with talking about hypotonia as a person who does not experience it daily. I do not know what it feels like to live with low tone. And that's a problem.

How can I possibly help family members, friends, and teachers understand the struggles of my child if I do not fully comprehend them?

What Does Hypotonia Feel Like?

I wanted to gain some sort of understanding as to what C felt each and every day, but since she is still young, I decided my best bet would be to reach out to some individuals who have a hypotonia diagnosis and see what they had to say.

While their answers varied, many of them referred to the same couch scenario over and over again, and I found it very relatable:

Hypotonia is like when you come home from a long day of work completely and utterly exhausted. You take off your shoes, you sink into your soft couch, turn on your favorite show, and get super comfy. Ahhhh...relaxing, right?! This is how C's muscles are regularly -- relaxed.

As you slowly savor your moment of relaxation, someone SCREAMS from the other room, "Get in here NOW!"

You know you need to move, and you need to move fast, but it takes a while to gather enough strength to pry yourself off of the couch. It may take you even longer to build up the speed to walk quickly and efficiently into the other room.

This is C’s reality. Every minute of every day, her body is in the “couch state.” And every time she is asked to do something -- sit here, move over there, raise your hand, trace this letter -- her body and her muscles have to get out of that “couch state” -- over and over again.

Can you imagine how exhausting that is? Every day is fight against gravity for her and other kiddos with hypotonia.

[ Image from 'The House Book', Terence Conran, 1974 ]

How Does Hypotonia Affect Everyday Life?

As you can envision from the couch scenario, after a long day of having to “get off of the couch” numerous times, C is very tired, and the other people I spoke with explained feeling the same way. With that being said, I feel that I must mention that hypotonia can and will affect people's lives in different ways -- just as it may feel different from person-to-person as well.

As a result, sometimes C -- like other children with hypotonia -- is slower to move than her peers and she may refuse to do tasks because she is exhausted or because she is afraid her muscles can't do what is being asked of her. She may struggle to sit up right and she may be a tad more clumsy than usual. She may want to be left alone instead of engaging with peers and she may be emotional. Normally, C shows her exhaustion with her emotions.  

And who wouldn’t be emotional after having to “get off the couch” multiple times during a day right after you got so nice and comfy?

How would you describe hypotonia? I would love to hear from you in the comments or via my FB page.

Saturday, May 27, 2017

Why I Dread Swimsuit Season As a Mom of Girls

I dread swimsuit season; usually because it results in me begging my 9-year-old to help me push and pull and shove my body parts so I can manage to maneuver out of an ill fitting suit in an all too small dressing room.

However, I have a new issue with summer swimsuit season -- judgy adults, especially those who feel entitled to comment on the swimsuits of kids.

Yes, those grown-ups do exist.

I've sat near them at pools and eavesdropped as they voiced their displeasure about the suits worn by pre-teen girls. "I'd never let my daughter out of the house in something like that," they say with an eye roll, before they go back to slathering sunscreen on their brood of boys.

The other day, I even had an acquaintance tell me, "I'm glad your daughters have modest swimsuits. Your job as a parent is to protect their modesty." Granted, they were in one pieces at the time, but have I been transported back to the 1800's?! (Side note, I let my girls wear two pieces too.)

And, I've received my fair share of criticism for allowing my daughters to wear two pieces too. My youngest, C, wants nothing to do with wearing a swimsuit this season.  She says they are too tight -- no matter the size.  So, before I hear another well-meaning or ill-intentioned mom, say"I would never let my daughter wear a two piece suit," please know that everyone is just lucky my kid is wearing one at all.

But the condescending comments of these adults don't just stop with swimwear.

I've read their comments on Facebook posts in which they -- along with an army of their grown friends -- pick apart a 10-year-old's dress as being too tight or her shorts as being too short. "What is that little girl wearing?" they inquire. "Where is her mother?" they question. "Girls today dress tooo sexually," they state as they look down their noses.

I've seen news article after news article about girls being reprimanded and sent home from school because their clothing was "distracting" to the male students. To this day, I have never seen one of these young ladies in an outfit that showed a body part more than her shoulders and legs. And yet, I've read the comments on these articles from adults who criticize and judge and offer such phrases as, "she's asking for it."


Attitudes and comments such as these make me fearful. Why do we feel it is okay to tear down our daughters? Why do we go out of our way to make them feel uncomfortable and to second guess their bodies? Why do we teach them that their bodies are the cause for the poor decisions of others?

I worry for young girls everywhere and for my own.

I worry that one day, my daughters will be outside happily splashing in the sprinklers or swinging carefree on the monkey bars or riding their bikes as their innocent laughter fills the air or sitting in a classroom ready to learn, and some judgy person will feel the need to comment on their bodies. I worry this judgy person will offer unsolicited remarks -- "Your dress is too short. That shirt is too tight. You're asking for it. Where is your mom?" And, since I agree that my job is to protect my daughters, I hope I am there that day to screw that judgy person's head on straight.

Friday, May 26, 2017

Before You Say, "I'd Never Forget My Kid in The Car"

Today, I began my regular daily routine of getting three people dressed, fed and out of the house before 6:30 a.m. Unlike normal, I had to drop my oldest off before taking my youngest to daycare and heading into work myself. Unlike normal, when I got into the car I realized that the car was on "E" and I would need to go to the gas station.

As I pumped gas, I waved at both of my kids in the car. We made silly faces at one another, and I did my best to hide my annoyance that the gas station stop was costing me precious minutes.

Needing a sense of normalcy, I re-entered the car and began to think about my work day ahead. This is a pretty standard routine for me. I drive to work, and I make my mental checklist of work-related tasks. Finish grading 120 essays. Check. Return a parent phone call. Check. Clean out that random file drawer that has begun collecting random papers. Check. I   began to relax.

Until, I heard my 8-year-old's voice pipe up from the back of my car, "Mom are you forgetting something? You forgot to drop me off."

After my initial "how the heck did I forget a 60 pound, non-stop talking, 8-year-old in the back of my car" freakout moment, I backtracked 5 miles to drop her off. 5 miles. I drove for 5 miles without even realizing my child was in the car. How? Because my normal routine was disrupted? Because like so many other working parents I'm under rested and overworked? I'm not sure.  But one thing I know is that it had nothing to do with lack of love or terrible parenting on my part.

Every year around this time, news articles about children left in cars begin to fill my social media pages.  The comments left by people under these stories sometimes offer condolences and many times attack the parent.  I understand the feelings that many commentors have -- frustration and anger, sadness and fear.

Often, people are quick to say "I would never leave my child in the car. There's just no way." Comments such as these give us a false sense of security that we are above such actions. Our kids are safe. We are safe. However, I realized how easy it is for something like this to happen. To anyone. Anywhere. In fact, from 1998 - 2016, there were 700 heatstroke deaths as a result of children left in cars. 700. Anyone. Anywhere. You and me included.

Unfortunately, most of the stories which involve parents forgetting their children in cars do not end the way mine did -- with a simple fix.  The reality is, no matter how much we love our children, accidents and mistakes do happen.  Judge less, love more.

Tips to Prevent "Forgotten Baby Syndrome"

"Forgotten Baby Syndrome" Statistics 

Sunday, April 23, 2017

Body Shaming

The other day, a dear friend of mine and fellow blogger wrote a tongue in cheek piece about a failed -- but humorous -- shopping attempt at lululemon. You can read it here.

As I read, I couldn't help but giggle to myself, because I could relate. I've felt like a fish out of water in a store that obviously wasn't intended for my wallet or my clothing size.  I've also had one of those "OMG-I'm-Stuck-In-This-Spandex-Muffin-Top-Sucking-In-Swimsuit-And-I-Can't-Get-Out" moments while in a dressing room at Dillard's. So when my friend wrote about her shopping experience at lululemon, I couldn't help but laugh a little.

My laughing quickly turned to shock when I began reading the comment section. Seriously, why am I a glutton for punishment?! I couldn't believe the amount of backlash she received for writing about a personal shopping trip that didn't go as planned. More so, I was surprised by the amount of males who felt the need to leave body shaming comments on a blog that is mainly intended for moms.

People like these guys who obviously aspire to be the next Carson Kressley, but unbeknownst to themselves lack any fashion sense:

Or these two fellows who are concerned about the vision health of people everywhere:

And these two who still think it is socially acceptable (was it ever acceptable?) to throw the word "fat" out there like it ain't no thing:

I once had a teacher who said, "if you throw a stick into a pack of fighting dogs, the one who barks the loudest is the one who got hit." Yep. I'm the barking dog. Those comments hit me right in my less-than-slim-gut. 

It's no lie that I've put on my fair share of post baby, post nursing, depression, ice cream obsession weight. I'm not proud of it, and I feel self conscious on a regular basis. I feel uncomfortable when I go shopping for clothes. I feel shame when I sit down to eat at a restaurant, because I worry that people are silently judging me -- for what I ordered, for eating all my food, for getting seconds. I feel embarrassed when I go for my run and cars pass me by. I am afraid they are laughing at how slow I am running, how short of breath I am, how out of shape I am. These are my issues and my insecurities, but they aren't mine alone and they aren't without cause. 

Just a glance through the comments of my friend's post proved that we have a long way to go when it comes to body acceptance -- accepting our own bodies and accepting the bodies of those around us. And while some of the commentors may argue that their harsh comments were tough love meant to motivate people like me to get into shape, I would have to disagree. Belittling remarks do not motivate and demeaning words do not inspire. 

Shaming others over their weight has got to stop. Instead, let's accept that we have no control over other people's bodies -- what they weigh, how they  look, what they wear, and let's focus on ourselves -- how we act, how we treat others, how we try to make the world a better place.

Health and well-being are extremely important, but there is so much more to a person than what it is outwardly apparent. Maybe we should be less preoccupied with the amount of weight on other people and more concerned with the amount of goodness in our own souls.

Saturday, February 11, 2017

When Hurting Leads to Fighting

I was hurt.

I was hurt when people questioned why we marched, and poked fun at it, and belittled it.

I was hurt when I saw post after post pleading to end the political talk, because these issues aren't THAT big of a deal and because Facebook is "no fun these days."

I was hurt when people threatened to "unfollow" and "unfriend" if they saw one more political post while some of us were fighting with every ounce of strength for our children, for our friends, for people we may have never met.

I was hurt when I was abandoned by a privilege I was once familiar with but now no longer know as a mother of a child with special needs.

I was hurt each time I saw a marginalized group of people have their rights threatened and every time someone confided in me that they feared they were next.

And as much as I was hurt by words, I was also hurt by the deafening silence of many of my "friends" and "family."

I was hurt. Now, I'm angry. Now, I fight.

Tuesday, January 17, 2017

What a Skate Around the Rink Taught Me

We took C skating for the first time tonight. I wasn't sure if it would be sensory overload -- the multitude of people, the loud music, the bright lights. I worried that she would become easily frustrated by the physical challenge of skating. I braced myself.

 "I want to skate, mom," she said over and over. And I listened to her. When we got out there -- amongst all the people, amid all the music, under the disco ball of lights, she looked at me, smiled, and said, "I can do it." Despite the doubt I felt, I trusted her. She softly removed my hand from hers and skated off like a pro -- smiling and waving as she left me.

As I continue on this journey, I'm learning to not let my own fears and doubt rule. Like learning to skate, it's a slow process -- one foot at a time, one fall after another. Listening and trusting isn't always easy, but sometimes it was our kids need the most from us.


When Hypotonia Makes Me Question If My Child Is Okay

When we first learned of C's hypotonia, I worried constantly about if she was going to be okay.  When she struggled to lift  her head, I questioned if she would ever walk. Would she be  "okay"? When respiratory illness after respiratory illness struck her and landed her in the hospital, I wondered if she would be healthy. Would she be "okay"? When we waited to see specialists and for the results from tests, I hoped this would not be her forever reality. Would she be "okay"? Each fall and bump and tumble resulted in me nervously asking C, "Are you okay?"

And with every missed milestone and therapy appointment and hospital visit, I often found myself wondering if I was okay too. When I found myself Googling my life away -- hypotonia search after hypotonia search -- I wondered if I was okay. When I felt angry and sad and stressed with unfamiliar hospitals and unknown diagnoses and my own unrealistic expectations, I questioned if I was okay.

Over time, C's hypotonia has become less and less visible to the untrained eye. Not long ago, her inability to stand and walk like her peers was glaringly obvious. Now, not so much. While she still struggles with her fine motor skills, I no longer have to carry her up the stairs; she can walk up them. I no longer have to help her up the playground equipment; she climbs up herself. I no longer worry about her gross motor skills. In fact, sometimes I even forget this journey all started with a gross motor delay. For the most part, I rarely have to ask her if she is physically "okay" anymore.

And then there are days like today -- days when hypotonia messes with her body awareness and balance and messes with my anxiety.

Today, C got stuck in her chair at school, tried to free herself, lost control and fell, resulting in a bruise on her head and a scratched up chin from the fall. When I picked her up, I immediately noticed her "ouchies." My stomach churned, my heart began to race and worry filled my head. I could feel my anxiety start to take over. Taking a deep breath, I gave C a giant hug, asked her about what happened and listened intently.

As her story came to a close, I started to utter a phrase I had not thought of or spoken in quite awhile: "Are you okay?" But before I could, C looked at me and said reassuringly, "I'm okay, mom." Deep down, I knew she was. She gave me a little smirk. And I  knew -- without question -- I was okay too.