Parenting

  • Quarantine Edition: Communicating with your Child’s Teacher

    Are you having trouble communicating with your child’s teacher?

    Many of us around the country are about six weeks into being quarantined at home with our families. Some families have adjusted well and have fallen into a routine of successfully balancing the new norm. However, some parents are still struggling with helping their children complete remote school assignments. In addition to extra housework, parents have found themselves feeling completely ill-equipped to help their children do their school work and it’s simply just not working for any member of the household. Overwhelmed parents have expressed that they are at their wits end with non-communicative teachers and their sea of seemingly endless assignments.

    So, what is the best way to communicate with your child’s teacher?

    I came across a complaint from a parent expressing her frustration with her child’s teacher. I’ve paraphrased to protect the parent, child and school district’s identity but the gist of her grievance is:

    I’m so over my son’s teacher. I emailed her to contact me days ago and I still haven’t received a phone call. In my email, I stated that I found some of the assignments confusing and told her that she needed to be meeting with my son and his class at least twice a week.

    She finally replied via email and told me that she taught the kids how to complete the assignment while in class so she doesn’t know why I’m confused. Obviously, I wasn’t sitting in class when she covered the subject matter. I’m sitting at my computer and I’m so irate with her condescending tone. I really want to give her a piece of my mind!

    I’m able to see both sides here. I’m a parent, educator and founder of Kid Care Concierge, where a big part of my job is to supervise teachers. Here are 4 tips that will lead to better communication with your child’s teacher while under quarantine.

    Ask very specific questions in order to get a direct answer. Instead of expressing that you’re confused, it might be more helpful to reword your reply to say that your child doesn’t understand x concept and you don’t want to further confuse her so you’re requesting the teacher to either send you step-by-step instructions of how to s/he’d like for you to teach her. You could also email the teacher to request a time to speak with him/her to go over the concept so that you can assist your child with the assignment. As tempting as it may be, cursing the teacher out will do nothing except further escalate the situation. Instead, be firm, direct and intentional in your communication with your child’s teacher.

    A little understanding goes a long way. It’s safe to say that the world has a collective newfound appreciation for teachers. Quarantined parents everywhere are wondering how teachers are able to supervise and educate 25 students at one time, day in and day out. Be mindful that your child’s teacher may be teaching your child while trying to manage to keep his/her own children quiet in the background.

    If the teacher has a “fiery” personality or just has a smart mouth, s/he probably didn’t take too well to the parent demanding how often she should meet with children. I agree that meeting with the child more frequently may clear confusion and there is never a reason to be non-communicative within a professional relationship, but the teacher is not going to make that extra effort if a parent is going back and forth with him/her.

    If the school day normally ends at 3:00, don’t expect a reply from the teacher after that time. Realize that other parents are likely confused, frustrated and have contacted the one teacher numerous times. Some teachers are teaching full classes of students, totaling over 100 students per day. Some teachers are without help with childcare or may have lost a friend, family member or student while being quarantined and are unable to properly grieve but continue to be there for your child and others. Teachers are still required to plan and write lesson plans, grade tests, write report cards and attend virtual meetings with their superiors all while caring for their own children, cooking, cleaning and trying to navigate getting essential groceries after they’ve finished teaching each day.

    Here’s where you woosah, grab a glass of wine or mediate before replying to the teacher.

    School districts provide a service to the school community. Teachers are on the front line so they get the pleasure of having to respond to irate parents who are oftentimes frustrated by a system the teacher did not create and cannot control.

    I’m going to share a little secret with you. Everyone except for teachers and parents who were homeschooling prior to novel coronavirus is winging it. Homeschooling is different than virtual learning. Trust me, I’ve written homeschooling curricula and it requires experiences that parents cannot provide while being quarantined. School districts had no intention of teaching virtually on a consistent basis; therefore, they did not prepare for it. Scaling a half year of a full curriculum into a virtual curriculum in less than two weeks while in the midst of a pandemic without some missteps is unrealistic. So what have districts done? The best that they can. Since I’m being completely honest here, let’s take it a step further and realize that although teachers are true heroes, they are human. Some adapt extremely well to change and will go above and beyond to make the transition as painless as possible for families. Others oppose change and shut down when it’s imposed upon them.

    Some districts are telling teachers how often and how to meet with students. Others leave it up to the teacher. Some school districts are requiring students to log in by 9 and work throughout the day, while others are simply requiring students to complete under two hours of work per day. In the example above, I’d email the teacher during school hours to request that s/he virtually meet with the child to clarify questions one additional day per week for extra help. Most teachers normally hold some form of office hours to provide extra help to students, so it’s not unheard of for a parent to make such a request.

    If the teacher is flat out non-responsive, contact the principal/district to gain clarity on how often they expect teachers to meet with students. Make sure that you keep a log of time and dates that you’ve attempted to reach out to the teacher and the nature of their reply. If the teacher is not doing what s/he is supposed to by district standards, then you’ll have an email thread to share with her supervisors showing that you’re a concerned parent who is not getting the help your child needs.

    Educationally speaking, we’re navigating uncharted territory. Clear communication is the only way we’re going to make it through this unprecedented time. We are all stressed out for a variety of reasons. Venting to a teacher and directing them how you want them to virtually teach your child may fall upon deaf ears. When contacting your child’s teacher while under stay at home orders be specific regarding requests and understanding when it comes to limitations, also keep in mind that the parent-teacher relationship is professional in nature and correspondences should be sent and recorded accordingly and be realistic.

    xo, Natasha

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  • Quarantine Edition: Parents Are Not Okay

    The effect of being quarantined at home with children has added another layer of stress to many   of our households, and quite frankly, some parents are not okay.  This is a time like no other.  We are all struggling to get through the days.  TGIF has turned into just another day of virtual learning, countless trips to the fridge and our names being called more than ever imaginable.

    A mother recently reached out disclosed that she was struggling with managing “EVERYTHING”.  She shared that since being placed under stay at home orders her stress level has gone through the roof, as she has been working full-time from home on her business, while cleaning, cooking, cleaning, figuring out virtual learning with her 5 children, changing diapers, giving baths, coordinating nap times and managing the emotional rollercoaster that comes along with a spouse who has recently been laid off.  

    Her plea for help really pulled at my heartstrings.  As a parent, I get it.  I’ve been there to some degree.  When my daughters were young, I stayed home with them.  I also started a small business so that I could continue to stay at home as they got older.  It was the hardest thing I’ve ever done.  Years later, I literally get a rush of a tension headache when I think about sitting at my desk in my home office trying to speak to employees on a conference call that I purposely scheduled during nap time, breastfeeding my newborn (ouch), while my two-year-old was running in circles, refusing to take a much-needed nap. Blink and it was dinner time.  It wouldn’t be fair to say that I can reasonably imagine how it would feel to add helping an elementary school-aged child with virtual learning assignments or not being able to have a reprieve at the local park. So, if you are an overwhelmed parent that is not okay while being quarantined, you are not alone and my heart goes out to you too.  

    If I might perhaps provide an alternate perspective, I’ll tell you that the more I speak to parents, the more I realize that our experiences of parenting while quarantined vary greatly dependent upon the ages of our children. I found that parents with children under the age of ten are extremely overwhelmed by the day-to-day effect of having to shelter in place.  While parents of children ten and above are oftentimes as overwhelmed,  our stressors vary slightly.  We also have the privilege of looking through a lens with hindsight vision.  


    So, for parents with multiple children who are trying to balance it all, many seem to really be struggling.  It’s important to lean on other parents who are going through what you’re going through or have gone through what you are experiencing in order to regain your footing.  Call, video conference or group chat with other parents and share your experience.  Some will have it worse.  Some will have it better.  Some will be at their wit’s end on Monday afternoon, others by Wednesday morning. 

    Last week, I had a three-hour conversation with another mom.  In the middle of the work-week.  Who does that?  We did because we both desperately needed it.  We needed a safe space to vent and recharge.  I Had dinner late that day.  Yep!  But who cares?  My family needed me to remain sane, so dinner was late.  No one starved and no one got the displaced wrath of this momma bear. I’d call that a win-win.  Wouldn’t you?

    While we all are staying home in order to keep our families, neighbors and front line heroes safe, it is possible to reclaim a sense of normalcy by getting out of the house, even for a moment.  If you’re fortunate enough to have your own yard, take time to enjoy it.  Make time to let the kids get out and play, run and use some of the energy that they would be expending at school during recess.  That’s why schools allow children to go out for recess even on cooler days.  Children have this amazing energy that needs to “get out”.  

    Flashback to my own two-year-old running around my home office.  Remember the varying perspective that I promised to offer?  When I was working from home with my newborn and toddler, I was so focused on trying to balance life as a perfect wife and super mom, that I oftentimes didn’t take advantage of the moment.   And, although at the time I had a graduate degree in psychology, was a certified school teacher, worked in a variety of daycare centers and schools with children of all ages; I was better prepared than most, I neglected to take a real step back.  Theoretically, I knew that I should’ve taken my two-year-old outside to run off the energy which would have led to her sleeping longer and sounder.  

    I’ll be completely honest, having two kids in two years, including a total of three months of stress that came along with doctor required bed rest over the two pregnancies and sleep deprivation like nobody’s business, makes one toss every last one of those child development books out of the window. Clearly, some common sense went out with it.  I’ll just blame it on the mommy-brain.  It’s a real thing, you know? 

    Seriously, get everyone out of the house.  Just let them take in the fresh air.  Don’t have a yard?  That’s fine, don’t leave the doorstep. Open the front door. Change rooms.  Move the kids from the back of the apartment to the front.  Just some way, somehow, shake things up.  If you feel like you’re losing it, imagine how they must feel with the purity of energy only a young child has and not being able to get it out.  

    Embrace the moment. We will never, ever get this time back.  The circumstances are horrible and we all wish that we could reset the clock back to the start of the new year, but we can’t.  What we can do is try to be positive and realize that this is all temporary.  

    The parents I speak to, like myself, with children over the age of 10 are stressed about going to the grocery store to feed their insatiable appetites, are worried about how this time of remote learning will affect applying to college later or how missing an entire season of sports will impact our children’s future.  However, as we are preparing them for their next phase of life, memories of their childhood become fainter. Many of us are envious of you.  Knowing that we’ll never get this time back is a reality that glares at us while in this stage of parenthood, we’re taking in the time we have left with our children before they leave the house.  No matter how hard things are, they will get better.  

    I needed to steal that three hours to talk to my friend.  They might need the same and may not realize it either.  You know what? Our breaks help everyone maintain their sanity in our household.  So, take a walk, alone, if you can.  My children are older now, so I make them run around our yard to get fresh air.  Sometimes, I’ll do it in the middle of the day during one of their virtual learning breaks. Do what you need to do to take care of yourself and your family.  Everything else will fall in place. 

    Your little ones will grow up and they will have actual memories or your pictures and videos to serve as memories.  I regret scheduling nap time conference calls instead of more time outside with my girls.  Create memories that you’d never thought you’d have.  Make the pillow fort that you don’t have time to make under regular circumstances. Break the schedule to enjoy PB&J outside.

    If you or someone you know is struggling during this pandemic, please click the link below for emergency and mental support. 

    COVID-19 RELIEF

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  • How to: Teaching Kids to Cope with Tragedy

    Unfortunately,  we’ve seen a rise in acts of terrorism over the past several years. Schools across the country now have lock down drills in addition to regularly scheduled fire drills so that students and school personnel should be prepared in case of emergency. According to cbsnews.com, the number of mass shootings, where four are more people were shot, ” so far in 2019 has outpaced the number of days this year, according to a gun violence research group. This puts 2019 on pace to be the first year since 2016 with an average of more than one mass shooting a day. As of Aug. 5, which was the 217th day of the year, there have been 255 mass shootings in the U.S., according to data from the nonprofit Gun Violence Archive (GVA), which tracks every mass shooting in the country.”

    These statistics are both alarming and nerve wracking to all of us, to say the least. Children, by nature,  are the most vulnerable physically, emotionally and mentally.  I’ll reassure you by sharing this before I cover how you can help children deal with disaster.  When asked for years to follow, what a child in my care remembered about the events on the day of a national disaster, his response was “green apples.”  So, how do we help our children cope with tragedy?

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  • Mom, Don’t Be Ashamed! Asking For Help Isn’t So Bad!

     Mom, you can’t do EVERYTHING.

    It’s okay to ask for some extra help!

    I remember speaking to my cousin one day when we were in our early 20’s. We were both college graduates, starting our careers.  She was an engineer and real estate investor.  I was a nonprofit strategist and had just purchased my first home.  Neither of us had children at the time.  She was traveling all of the time for work and was rarely home.  She mentioned that she had a housekeeper who would come in and clean her home, as she didn’t have time.

    At the time, it struck me as a little odd, as I hadn’t really known anyone personally to have a housekeeper.  So, I asked her why she felt like she needed a housekeeper if she was the only one living in her home and I will never forget her reply.  She said, “I don’t have time to get to the small details like cleaning my baseboards.”  I laughed to (and at) myself, it takes me 12- 15 hours per week to clean my home and I know for certain that I miss the baseboards most of the time.  It was one of those conversations in passing that I never really thought about until years later.  In the meantime, I kept up with my weekly cleanings, mostly splitting the time over the weekend. Cleaning the bathrooms and kitchen on a Friday night with the music blasting, sometimes while indulging in a little bubbly then finishing up the rest of the house on an early Sunday morning was my usual routine.

    Fast forward to 2013 and life was very different.  My children, then 7 and 9, were busy with school, ballet and piano.  Running educational services firms in multiples states and holding a hefty real estate investment property load, my businesses were in full swing. At the same time, Working Mother Magazine was collaborating with Diane Sawyer and the World News to cover a story about busy working moms struggling to find balance. The producers at ABC learned about the things I was doing and decided to have me share my story to represent working mothers all over the world.

    I quickly realized after speaking with the producers over the phone, that life in the spotlight moves at lightning speed.  They told me that a camera crew would be coming to meet me at my home within the week and they’d be following my family and me around for three days filming our every move.

    I was honored and shocked that the world-renowned, Ms. Diane Sawyer caught wind of my regular little life and saw fit to choose me of all people to be on tv.  Can’t you just see me smiling from ear to ear while happy music is blaring in the background?  Well, cue the DJ to scratch the record because just as quickly, complete panic set in. ABC PRODUCERS ARE COMING TO MY DIRTY HOUSE. Ohh em gee!  Did they say that they’d be here in a few days? Looking at the unorganized fridge, in the cracks and crevices that I thought were pristine when it was just my family and me and around the dusty baseboards that I swore would be amplified by the network’s “good” cameras, my vision became like Instagram’s superzoom.  How was I going to scrub this house from top to bottom to prepare for the world to see my house, keep up with my weekly chores of laundry, cooking and washing dishes while working, parenting and driving my kids around from activity to activity like UberMom?  The only thing I could do was work smarter, not harder.  It was time to follow my cousin’s advice.

    I scoured the internet for a maid service in the area.  There were so many.  I had no experience in the area?  How should I choose?  I had no clue. How could I be sure that they wouldn’t take anything?  Was I going to really let a stranger into my home, my sanctuary, and give up my privacy in exchange for a quick clean? Cue in every Lifetime movie where the mom hires the crazy helper that ends up terrorizing the house.  After carefully thinking about how overwhelmed I was on a regular day and weighing it against the reality that lots of people hire help with no problems, I decided that the only sane thing to do was hire a cleaning service.

    My friend, a fellow working mompreneur, also has a stressful career and multiple children.  Her home was a decent size and was always clean.  I wasn’t sure if she was just the perfect mom or if she hired help so I did something I hadn’t done before…I simply asked.  She was more than receptive to my inquiry.  She gave me a knowing look as if she had been in my shoes and revealed that she hadn’t thoroughly cleaned her house herself in years.  She immediately texted me the number and for the first time, in a long time, I felt like I was being invited off of the island we oftentimes call parenthood.  You know, where the mommy/daddy guilt kicks in because it’s unrealistic to accomplish everything we imagined we could do before we actually became parents.  Does that sound familiar?

    When I tell you that I am completely over the mommy guilt I used to hold on to before initially hiring the service to clean my home.  I couldn’t be more serious.  What took me close to 15 hours to complete on a weekly basis took the cleaning ladies 3 hours.  Let me say that again for the folks in the back that may have missed it.  One phone call gave me back 15 hours of my week.  Everything in place, bed linens changed and the entire house smelled like the cleaning aisle at the supermarket.

    I was able to tape my segment over 3 days and I didn’t have to lift a finger, broom, mop, etc.  I looked like the “perfect mom” too.  And, I was.  Not because my house was ridiculously clean or because I was fancy enough to hire help.  I finally come to realize that asking for help was okay and that my previous assumptions that I’d previously made about other moms were based on a falsehood.

    While waiting for my daughters to arrive home from school to tape their segment, I had to opportunity to chat with supermom and ABC anchor Amy Robach about how she balances her busy life.  As we bonded over our mommy guilt moments, I realized again that most mothers found the need to have help with tasks they used to conquer before having a family.

    Prior to talking to both women, I had been working on ways to expand my existing business, a tutoring service, to include other services that parents found useful.  However, once my segment aired and so many parents expressed how overwhelmed they were by the demands of parenting, working and running a household, I realized that there were lots more working mothers in the same situation than I had imagined.  It was the reaction of those parents that gave me the permission I was looking for to close my tutoring service and create a more inclusive and comprehensive service for parents than had ever existed on the market.  Shortly after my segment aired, I formed Kid Care Concierge, a concierge service for busy parents like me who would no longer feel guilty about need to hire help.

    5 years later, we have tutors, helpers, sitters and almost every other service that one could think of helping overwhelmed parents.  Like a concierge service in a hotel, my staff does everything for parents after just one call.  My first client was myself because I was in desperate need of help. Ironically, I was scrolling through a Facebook “mom group” last week and I stumbled upon a post from a mom looking for recommendations for a cleaning service.  What I found most interesting was that she sounded like me years back, justifying why she was looking for help as if it was not okay.  I inboxed her to reassure her that perfect moms don’t exist and it was okay to need help.  We all do!

    As I sit at home after working at my office all day, I’m sitting in my kitchen with my daughters cooking dinner together as I type this post.  At the same time, my staff is upstairs taking care of the weekly cleaning.  I feel ZERO guilt.

    Would you like to learn more about Kid Care Concierge?  Visit us at http://www.KidCareConcierge.com or email us at info@kidcareconcierge.com.

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  • The Key to Making Good Parenting Decisions

    A few years into this parenting thing and most of have a moment, or a few, where we have a complete meltdown.   Like the ugly cry in the car type of meltdown. Hopefully, that car cry doesn’t take place in the carline while waiting for the kids to get out of school but it is bound to happen. As a parent, it is so hard to know if you’re making the “right” decisions for your children.

    The hope is that we will be perfect parents but the harsh reality is that there are no perfect parents.  I encourage you to stop torturing yourself by trying to be the parent you saw on television. Claire Huxtable and June Cleaver and were both great moms but I’m willing to bet that even their real-life parent life didn’t parallel that of their fictional characters.  

    Grab a cup of coffee or tea as we explore how we can make good parenting decisions.

    1. Every Child is Not the Same

    If you have more than one child then you may have already realized that siblings, heck even twins, can behave like polar opposites.  My daughters, two years apart, are similar in many ways but couldn’t be more different in other ways.

    If you think that you’ll be able to take a parenting guide, follow each outlined step in order and be able to parent each of your children in the same manner, please close the “manual” and walk away slowly because you’re in for a long ride.  What works for one child may not, and probably won’t, work for the other children in your family. As individuals, we each respond differently to stimuli. Accordingly, it’s important to keep that in mind as we attempt to make good parenting decisions.  

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  • 4 Tips: Traveling with Children

    Who doesn’t love a vacation?  Vacationing is literally my favorite pastime. Take me to a warm beach and I’m a different kind of calm. Although I love vacationing, traveling to and from paradise can be overwhelming.  Life as a parent is stressful by nature. Traveling with babies and toddlers can be a disaster…if you don’t have a plan.

    The key to successful traveling with your young child lies within anticipating and planning around what might happen while en route. It’s imperative that you consider their typical schedule when booking your flight. Children need naps. Heck, some adults are cranky sans the nap.  It is really asking too much for a tired child to behave while trekking through the airport, standing in line for security checks, waiting for the adults in the party to be scanned, staying still while said adults put back on shoes, belts and collect belongs from the conveyor belt, go through customs, trek through the airport again to find the correct terminal and gate, sit there for an hour with parents who are hoping not to be delayed, stand in line to get on the plane, sit still while the adults maneuver getting their carry on luggage while ushering the kids out of the aisle before being trampled by folks rushing to the back of the plane and patiently wait for the plane to finally take off then sitting for about 4 hours to land, head to baggage claim and take a shuttle to the final destination.

    Does sound like a lot? Good, because it is.  Frankly, it’s a lot for everyone involved. This is especially true for a child under the age of 6.  

    1. If possible, book the flight around their naptime or bedtime (red-eye flights).

    I don’t care if I was traveling by plane or car, trips were scheduled to minimize bedtime disruption.  When I took my little ones from New York City to the Bahamas for the first time, we took a red-eye. They slept the entire time and my sanity was left intact.  I struggled a little with getting them and those darn rolling backpacks through the airport but considering everything else that could’ve gone wrong, that was a drop in the bucket.  Side note- Why do airports seem 1,000 times bigger when traveling with kids? You really do realize how tiny their little feet are when you’re attempting to rush and they just can’t keep up.   

    2. Book a window seat.  Mother nature is entertaining.

    Just trust me on this one.  Throw the shades up on a sunny day and a crying baby will be so amazed by the view that they’ll likely stop in their tracks. I still get mesmerized by the view so I get it.  If the little one isn’t as intrigued as I am, try engaging them by talking to them about what you’re seeing. “Oh Jordan, do you see that cloud? It looks like a doggie. Do you see one that looks like a fishie?”  That game can last for a long while if you’re willing to be creative.

    3. Book a seat near the front of the plane.

    Location. Location. Location. If the child is facing forward while crying in their seat, the noise will travel forward, disturbing fewer people. Remember life before kids? Looking at “those parents” wondering how on earth can they not control their crying kids at the restaurant or market? Fast forward to now and you not only wish you take back every glare you bestowed upon those poor parents but you will give the stare of death if passengers dare glance at you and your inconsolable child? It’s easy to get frazzled and unfocused if you have an entire plane staring at you.

    If passengers are annoyed, you won’t have to see them constantly looking back or shaking their heads in disbelief that a child is actually crying because his/her routine is thrown while stuck on a plane. Just focus on doing your best to comfort your child. Either they’ll likely join you in the “those parents” club one day too or they’ve forgotten how difficult traveling with small children can be for parents.  At any rate, it’s better to have annoyed passengers throw tantrums literally behind your back where you don’t have to deal with them or feel the need to constantly apologize for something beyond your control.

    4. Pack distractions.

    I’ve already exhausted you by taking you through a trip through a child’s eye. Pack their carry on bag accordingly.  Keep in mind that you will probably end up holding their carry-ons and yours. You might very well also end up carrying at least one child in addition to all of the bags if things don’t go according to plan. Be intentional about packing. Don’t just throw things into their bag.  

    Bring a variety of things to keep them engaged.  Pack the favorite teddy and toys that foster the use of the imagination without relying on technology.  You’ll have lots of time to play with them while in flight. 

    Preload your tablet or smartphone with their favorite movies. I never downloaded a movie on my iPad before I traveled with my daughters.  I found 3 very long child-friendly movies that they’ve both enjoyed in the past, 2 just as long movies that they’d never seen and splitter earphones so they could listen simultaneously. That was one of the smartest moves of my entire life! #winning

    Flying is no time to try new foods.  I don’t recall ever feeling satiated upon finishing a meal on an airplane.   Children are very cranky when they’re hungry. Do yourself a favor and pack their favorite foods. Feed them the perishable foods first, keeping in mind temperature and storage requirements.  The absolute last thing you need is a child with an upset stomach 35,000 feet in the air.

    The light at the end of the tunnel is that everything will be okay.  You will get through the trip to and from your destination.  You will create memories with your family.  It will be worth it.

    We’ve all been there and we’ve survived.  You will too. Happy travels!

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  • 5 Mommy-Time-Out Ideas

    Motherhood is rewarding.  Motherhood is exhausting. On rare occasions when we meet up, my mommy friends and I literally find ourselves “sneaking” away from our families. Of course, no one is ever too far away from the cellphone just in case there’s an emergency.  But, it is important and healthy to disconnect from our children for brief periods of time. Take a moment, or a few, to ourselves enables us to refresh and recharge.

    Here’s 5 Ways to Take Mommy Time Out: (more…)

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  • Axenfeld-Rieger Syndrome (ARS)

    Who doesn’t love a cute and cuddly baby?  They’re so adorable that it’s had to resist getting all smiley and silly when we see them in the local grocery store or at the mall. They’re mini conversation starters.  When parents take their child(ren) to public places, they come to expect hearing all of sorts of comments, including both kind words and unsolicited advice. I can remember going into a store with my daughters when they were babies, thinking that we’d just be a few moments only to end up in a fifteen minute conversation with someone we attempted to rush past in the paper towel aisle. Complete strangers would make comments like, “Oh, they’re adorable!”, “How cute are they?”, “You should put a sweater on her; she looks cold.” or “What big, beautiful eyes she has!”  But, what if the child’s big eyes were linked to a rare genetic disease?

    Axenfeld-Rieger Syndrome (ARS)

    Axenfeld-Rieger syndrome is a group of disorders, mainly affecting the eyes. Roughly about half of the people diagnosed with the syndrome will develop glaucoma.  Glaucoma is defined by the National Eye Institute as a “group of diseases that damage the eye’s optic nerve and can result in vision loss and blindness.” Glaucoma may be present at birth or the onset might not occur until adulthood.  People affected by glaucoma have increased pressure behind their eyes. If not treated, glaucoma may lead to blindness.

    Let’s take it back to our high school biology class for a moment, shall we? The cornea is the clear part of the eye.  The iris is the colored part of the eye. The retina is the light-sensitive tissue located at the back of the eye. A properly working iris contracts to adjust for the amount of light coming into the retina.  The black “dot” in the center is the pupil.

    People affected by Axenfeld-Rieger syndrome will likely have a cloudy cornea.  They may have  iris hypoplasia.  The American Academy of Ophthalmology indicates that iris hypoplasia is where the iris doesn’t develop properly or the iris that’s intact, erodes. Hypoplasia affects the iris’ ability to block the amount of light hitting one’s retina.  The pupil may be may be dislocated, abnormally large, extremely small or off center.  

    Other Presenting Symptoms of ARS

    Although primarily an eye disorder, other parts of the body may become affected by Axenfeld-Rieger syndrome. Most people will have distinctive facial features inclusive of dental and craniofacial anomalies.  Dental abnormalities may include having oligodontia, which is having fewer teeth than normal, or microdontia, unusually small teeth. The teeth may be cone shaped or widely spaced. The face may appear flattened and the eyes may also be widely spaced.

    How is Axenfeld-Rieger syndrome passed from parent to child?

    As an inherited disorder, ARS is passed in an autosomal dominant manner.  According to the U.S. National Library of Medicine, “Autosomal dominant is one of many ways that a trait or disorder can be passed down through families.  In an autosomal dominant disease, if you get the abnormal gene from only one parent, you can get the disease. Often, one of the parents may also have the disease.”

    Treatment and Therapies

    • Children with extreme sensitivity to light or photophobia might be more comfortable wearing sunglasses when they go outside.
    • Some forms of glaucoma may be treated with eye drops or laser surgery.
    • Many craniofacial abnormalities may also be treated with surgery.
    • Visual aids may also be helpful.

    Supporting Parents of Children with ARS

    A child with ARS may have unusually large eyes.  They may appear almost doll-like. It may be hard for most of us to resist impulsively uttering our comments when we see one of these precious children. I imagine that a parent of a child with Axenfeld-Rieger syndrome might get tired of hearing, “oh, what big eyes she has.”  They might even feel the need to explain or justify why the child’s eyes appear “different”.  So, let’s think twice before we offer uninvited advice to parents regarding their child’s facial features unless, of course, we’re simply offering compliments without question or judgement.  

    Resources for Parents

    The Childhood Glaucoma Foundation – https://www.childrensglaucoma.org/

    NIH/National Eye Institute – http://www.nei.nih.gov/

    Genetic and Rare Diseases (GARD) Information Center – https://rarediseases.info.nih.gov/

    Sources:

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