October is Dwarfism Awareness Month

Not that long ago, I learned that October is Dwarfism Awareness Month. This isn’t something I hadn’t been aware of before the birth of nephew, Charlie, about 19 months ago. I shared an interview with my sister, Charlie’s mom, last October, and I’m checking back in with her here:

How is Charlie Doing Now?

Charlie is 19 months old.  He’s cheerful, social, and easygoing, and enjoys making people laugh with silly toddler humor.  To be honest, he has become quite a ham.  Despite his lack of spoken language, he is very vocal and effectively communicates what he wants and needs.  In the last year, Charlie has checked several developmental milestones off of the list.  Because his body mechanics are somewhat different, his developmental milestones came on a different timeline than many average height kids.  He started crawling at ten months.  Like many kids with achondroplasia, he does not do the typical four point crawl.  Instead, he does the army crawl using his arms to pull the rest of his body.  Charlie sat up without support at 13 months.  This is a major milestone for all kids but especially those with achondroplasia.  He pulled to a stand a few days after achieving unsupported sitting.  At 16 months, Charlie began using a toy walker to get around, and became very interested in keeping up with his brother and the kids in the neighborhood.  This desire was very motivating for him to improve his walking and increase his speed with the walker.  Though he isn’t quite walking independently (but he has taken a few steps!), he zooms around the house and all over the neighborhood with his walker.

One of my favorite pictures of Charlie

Does Charlie Still Have a Trach?

Charlie has had his trach for 13 months, and he’s doing very well with it.  He has no difficulties with breathing and is generally unfazed by his trach.  More recently, he has entered into the predictable toddler phase of threatening to pull the trach out (and sometimes actually doing so).  We manage it like any other undesirable toddler behavior.  Adjusting to caring for a child with a trach was very challenging at first.  The learning curve is steep in the first few months at home.  In his first winter with the trach, Charlie was sick for the better part of six months.  It was exhausting but we learned a lot about caring for his medical needs in a variety of situations.  We’ve also learned a great deal about navigating a variety of systems including doctors/hospitals, insurance, and home care nursing agencies.  Because caring for a child with a trach requires knowledge of an uncommon set of skills, Charlie cannot be left with a babysitter.  Instead, he can only be left with nurses who are familiar with trachs.  While we are so grateful to have good nurses who help care for him, having other caregivers regularly in our home comes with a whole other set of challenges.

The trach has caused Charlie to have delays in speech development.  Because the trach prevents air from passing through the vocal cords, it is hard for him to make sounds.  We are currently working, with a speech pathologist, on developing some spoken language.  In the meantime, Charlie uses American Sign Language to communicate.  He picks it up quickly and is only limited by the adults around him who are slower to learn.  One year in, I think we have all adapted fairly well but are looking forward to a time when he does not needs his trach.  His doctors expect that it will be removed next summer.

As Charlie’s Primary Caregiver, How Have You Evolved in the Past Year?

In the time since Charlie was born, I have changed a great deal.  One of the most significant changes has been my increased adaptability.  While some may argue that I still have a ways to go (my husband may want to chime in here…), the last 19 months have taught me how to roll with things more easily.  No parent expects to have a child with any special needs.  There is a degree of shock and grief that is associated with the shift from one’s (arguably unrealistic) expectations.  I certainly experienced this when Charlie was diagnosed with achondroplasia, as well as when he got the trach.  There is typically a period of time that I may feel shocked by unexpected changes, but then I find my footing and move forward.

Another big change has been a shift to being more outgoing.  I am an inherently introverted person.  Our current life does not allow for much time alone.  Besides having two small children, (which eliminates all alone time for any parents), we have a parade of providers and caregivers through our home each week.  Though this can be hard for me, I am beyond grateful for the village that our family has created.  I am also more outgoing with strangers and acquaintances.  It is amazing how motivated I am to reach out and talk to strangers to make sure the kids get what they need.  These days, I’ll talk to anybody if I think I will learn something helpful or make a useful connection.  We just learned that Charlie will need glasses, and in the last few days, I have approached several people with small children wearing glasses, to inquire about their child’s opticians.

How Is the Rest of the Family Doing?

The transition from a family of three to a family of four was not the smoothest for us.  My older son, Ben, did not readily embrace being an older brother.  The fact that Charlie had medical special needs that required so much more attention did not make the transition any easier.  Given that Ben had such difficulty adjusting to having a baby brother, my husband and I waited a while before sharing the information that Charlie is a Little Person.  At the time, our thinking was that we wanted Charlie to be treated just like everybody else.  We did not want to make the fact that he is an LP into a “thing” by making a big announcement.  Then, Charlie’s trach required so much of our attention, we just didn’t think about sharing this information with Ben.  After Charlie turned one, it began to occur to me that we needed to start talking more openly, with Ben, about Charlie being an LP.  I used Ben’s questions about my upcoming lunch date with a mother of another child of an LP as an opening to share this news with him.  Our family had been lucky enough to have an amazing babysitter who is an LP.  Ben loves her.  When I told him that Charlie is an LP like her, he was briefly surprised but was generally unfazed.  When I brought the topic up the next day, he asked if this was why Charlie was smaller than other kids his age.  From that point forward, our family has comfortably talked about Charlie being an LP.  In September, Ben attended his first LPA social event and had a great time.

Since the spring of this year, Ben has come very far in embracing his big brother role.  As he told my niece when she asked if he wanted a baby brother, “In the beginning, yes.  In the middle, I was like no way!  Now, yes”.

Hamming it up with his walker

What Have You Learned about Dwarfism in the Past Year?

I have become more tuned into the varying opinions, within the LP community, about whether or not dwarfism is a disability.  Not surprisingly, there are a wide range of opinions.  Some LP’s do not wish to be seen as disabled.  Rather, they wish to focus on the ability to do all of the same things as average height peoplee, but in a different way.  Others identify strongly with being disabled and see it as a core part of who they are.  As Charlie’s parent, I think that it is important to develop my own viewpoint on this, as I will have a role in shaping how he views himself.

I have also become much more aware of my own ableist attitudes and language.  The world is built for able-bodied individuals.  Those of us living without disabilities move ignorantly through the world often, with little or no awareness about the experience of people with disabilities.

What Would You Like Others to Know About Dwarfism?

Check your prejudices.  Somehow, it is easy for us to forget the personness of individuals we mock.  My heart breaks when I think of the first time that Charlie is made fun of for being a Little Person.  Charlie is more similar to the rest of us than he is different.  I hope that people remember this about all Little People – and really anybody with differences.

What’s Up Wednesday: February 2017

What We’re Eating This Week

I got some inspiration from two of my favorite Food Network cooks this week: Ina Garten and Ree Drummond. Plus, we’ll be out-of-town this weekend, which means fewer nights of cooking for me – woo hoo! You can read this week’s full meal plan here.

What I’m Reminiscing About

I recently went through a bunch of old photos with my husband, and there were a number of ones of my sweet, old kitty, Tony. He died a little over a year ago, and I still miss him. With apologies to his (living) sister, Sophie, Tony was indisputably the best cat ever. I adopted the two of them when they were kittens, and I was only 25, and had just moved to California for work. I don’t miss those lonely days of being across the country from my friends and family, and finding my way in a new place, but those two made my time there more bearable.

What I’m Loving

We’ve been enjoying some unseasonably warm weather lately, and it’s got me believing that spring is almost here. Seriously, highs in the 50s in upstate New York in February?? I love it!

What We’ve Been Up To

It’s school vacation week here, so I’m home with my daughter all week. We had a ladies’ “day of beauty” yesterday, with hair cuts and manicures. (The “day of beauty” concept was my way of bribing her to get a hair cut, which she hates. It took years for her hair to grow long, and now she never wants to lose a centimeter of it.) Today we have a Girls Scouts ice-skating event, then a visit to a friend’s house, and Thursday her Brownie troop is going on a tour of a local grocery store. Friday we’re packing and heading to Massachusetts for my nephew’s first birthday party.

 What I’m Dreading

Next month, I’m going to cut added sugar out of my diet, and, while I’m very excited to try it, I’m definitely concerned about having a more limited diet. For me, one of the most intriguing things about cutting out added sugar is going to be realizing just how ubiquitous it is. I’ve started reading the labels of some of my favorite foods, and have been distressed to find added sugar in many of them.

What I’m Working On

What – me procrastinate?? Yep, I’m still dragging my feet on our taxes. Actually, I have everything we need, with the exception of a letter about a donation. I still need to fill out the questionnaire from our accountant, though, and I haven’t forced myself to sit down and do it, yet.

What I’m Excited About

Even though I’ve embraced winter this year, I’m excited that it seems to be loosening its grip. Spring’s arrival seems almost imminent, and I’m excited to welcome pansies, daffodils, and leaves back to our yard!

What I’m Watching/Reading

I’m watching absolutely nothing these days. Nothing. Seriously, with the exception of watching some news coverage when I make dinner, I’m just not switching on the TV these days.

I’m struggling to get through the book, The Case Against Sugar. It’s not exactly what I expected, and it’s fairly dry. I’m definitely going to need to read some fiction after I finish this one. (You can see all of the books I’m reading, have read, and plan to read in 2017 here.) I’m also always slowly working through my huge pile of magazines – The New Yorker, O, Money, Real Simple, The New York Times Magazine, and Kiplinger Personal Finance.

What I’m Listening To

Podcasts, of course! However, I’m completely caught up on binge-listening to all episodes of my favorites, so I’m in need of some new options. Recommendations??

What I’m Wearing

My school (and work) vacation week uniform consists of yoga pants and a fleece at home, and jeans and sweaters when I leave the house.

What I’m Doing This Weekend

We’re heading to Massachusetts for my nephew’s first birthday party. I don’t see my sister often enough, so it’ll be fun to catch up with her this weekend. My parents will also be there, and my daughter is beyond excited about spending time with my sister’s older son. (Sadly, she’s a lot less interested in her “baby cousin”…)

What I’m Looking Forward to Next Month

Seeing if I feel any differently “off of” sugar, gaining an hour of daylight, and maybe, just maybe, seeing the first signs of spring bulbs.

What’s up with you??

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What’s Up Wednesday: September, 2016

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I’ve been reading What’s Up Wednesday posts for a while, so I’m very excited to do my own this month…

What We’re Eating This Week: I dusted off my slow-cooker when the temps cooled and I went back to work. This week I’m using it to make two, new-to-me recipes. We’re also having taco salads and breakfast-for-dinner, two family favorites. You can see my full meal plan for the week here.

What I’m Reminiscing About: Because my daughter’s birthday is coming up,  I can’t help but reminisce about her arrival in our lives. She hung on for a few days past her due date, my doctor induced me, and she ultimately was born via c-section, seven years ago. Sniff, sniff…

What I’m Loving: Apples, and pumpkins, and squash – oh my!

What We’ve Been Up To: Settling back into our school-year routines. In addition to my daughter being back in school, I’m back at work two days per week, and my daughter is doing several extracurricular activities (hip hop dance, gymnastics, and Brownies). I’m also blogging (obviously), and in the midst of my semi-annual purge of my daughter’s outgrown clothes.

What I’m Dreading: Darkness. Even though the days have been getting shorter since the summer solstice, I only really started noticing a difference in late August. By the end of next month, it’s going to be very noticeable, and once we set the clocks back in early November, well, I don’t even want to think about that…

What I’m Working On: This week I’m tracking how I spend my time in 30-minute increments. I’m reading I Know How She Does It, by Laura Vanderkam, and she suggests that better time management starts with tracking how you’re already spending your time. I’m also trying to complete an editorial calendar for October for this blog, and starting to understand my least favorite social media tool, Pinterest. (I consider it a black hole, where I end up spending way too much time, and come out feeling incredibly uncreative.)

What I’m Excited About: Fall decorations!! It took me a while to warm up to them this year, but I’m thrilled to have mums, corn stalks, and pumpkins out at our house now.

What I’m Watching/Reading: I don’t really watch any TV shows, but I’m a bit of a news junkie. However, I’ve scaled it back this summer and fall, since I just can’t take any more election coverage. November 8th cannot come soon enough for me! As I mentioned above, I’m currently reading I Know How She Does It, by Laura Vanderkam. (You can see everything on my fall reading list here.)

What I’m Listening To: Podcasts galore! In particular, I just started listening to Her Monday with Jean Chatzky, and I’ve been binge-listening to catch up on the episodes I missed.

What I’m Wearing: Fleece, sweaters, long-sleeve tees, jeans, and boots – my kind of clothes!

What I’m Doing This Weekend: Saturday is my 11th wedding anniversary. Unfortunately, I didn’t schedule a babysitter on-time, so we’ll be enjoying a family anniversary dinner, followed by a date night next weekend. Other than that, we don’t have any plans at this point. (And that’s just how I like it!)

What I’m Looking Forward to Next Month: Our anniversary, my daughter’s 7th birthday and two parties to celebrate it, and Halloween!

What Else Is New: Work, school, fall… isn’t that enough?!?

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Summer 2016 Recap: Highs and Lows

“She turned to the sunlight And shook her yellow head,And whispered to her neighbor- -Winter is dead.”

This is my daughter’s last full week of summer break. Although fall doesn’t technically begin for a few more weeks, once the school bus rolls up, summer is essentially over. (Cue the sobbing.) Summer, 2016 is, sadly, in the books. Here’s how it went for me:

Highs

  • I started a blog! But you already know that. Thank you so much for reading!! And for following me on Facebook. And Instagram.
  • I came close to achieving the balance of regular, fun activities for my daughter, without driving myself crazy, that I described here. Every day wasn’t a barrel of monkeys, but I feel good about the amount of socialization, fun, and educational activity my daughter got this summer.
  • I read some great books. I didn’t read a single book that I didn’t enjoy, but some were better than others. Overall, I’d have to say The Nest was my 2016 summer-reading favorite.

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  • Summer camps were a success. My daughter has a long history of disliking summer camps of all kinds – even the ones she clearly enjoyed. (She’s an anxious homebody. I wonder where she gets these traits…) This year we tried two new camps – theater and art – and she has said she’d like to do both again next year. Whew!
  • We all survived the LONG drive to Bar Harbor, Maine, and back. We split the drive up over two days, but we drove home all at once, and those 9.5 hours in the car almost broke me. Fortunately, I’m able to read in the car, and we brought a bunch of DVDs for our daughter to watch. And we stopped at one of the many conveniently located New Hampshire Liquor Store rest areas.
  • I went to some great shows at SPAC. My husband has a contact in the SPAC box office who has gotten us free tickets for orchestra and ballet shows there the last two summers. This year we saw one New York City Ballet show, and a fantastic Philadelphia Orchestra show. Then I balanced out that culture by taking my daughter to the Kidzbop show last week.

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  • I ate lots of ice cream and kettle corn. Thanks, Dairy Haus, Humpty Dumpty, Plum Dandy, and Broadway Kettle Corn!

Lows

  • Getting my daughter to read and practice math was a near-constant struggle. I registered her for several summer reading and math programs, to keep her motivated to practice her skills over the summer. She was enthusiastic for about a week, and after that it became like pulling teeth.
  • My garden was something of a let-down. I didn’t get things started early enough, and I didn’t dedicate enough time to gardening throughout the summer. As a result, my veggie-garden yields were pretty low, and my flower gardens are full of weeds.
  • I didn’t bring my daughter to several places I intended to. I had planned to bring her to a variety of new-to-her local landmarks and attractions this summer, but we didn’t make it to any of them. What can I say; I’m a creature of habit.
  • The new behavior system didn’t create much behavior change. I created a summer positive-reinforcement plan to get my daughter to adopt some new (and overdue) habits this summer. Like the summer reading programs, she was very motivated for a couple of weeks, and eventually lost interest. Next up: a fall negative-reinforcement plan!
  • I ate way too much ice cream and kettle corn. Damn you, Dairy Haus, Humpty Dumpty, Plum Dandy, and Broadway Kettle Corn!

How was your summer? What were some of your highs and lows?

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Weekly Recap

Happy weekend! With abundant heat and humidity, the July 4th holiday, and a full week of summer camp, this week felt like the first true week of summer. Here’s a recap of the highlights:

July 4th

As you know, July 4th was on a Monday this year. My husband’s uncle throws a big party at his house in New Jersey every year, and this year it took place on the preceding Saturday, the 2nd. It’s a great chance to catch up with his extended family, and there’s always a huge spread of food. This year was no exception, and even included a whole, roasted pig. (I like pork, but I couldn’t bring myself to eat it with the butchered corpse seeming to stare at me from the carving table. I stuck to burgers.)

The actual July 4th holiday felt kind of strange to me, since my daughter’s camp week started on Monday. As a result, we skipped the parade and other festivities in downtown Saratoga. Instead, my husband and I spent the day doing chores around the house. I did some cleaning – okay, and some reading – while my husband worked on dismantling our deck, which is being replaced next week. We finished the day with some delicious grilled fish at home.

Summer Reading Update

I finished reading Long Live the King while we were in New Jersey, and started reading The Nest. Long Live the King was pretty good, but I’m absolutely loving The Nest! I rarely read very new fiction, but I’m so glad I did this time. This book is about a group of dysfunctional siblings, who were planning to receive a substantial inheritance, until it was spent cleaning up a big mess made by the oldest brother. The other siblings desperately try to get him to pay them back, since they’ve basically dug themselves into financial holes, in anticipation of getting the inheritance. I plan to finish it this weekend, or early next week.

Summer Camp

Summer camp is a touchy subject in our house. My daughter is an only child, so it’s important for her to have socialization, especially over the summer. Also, camp gives her something to do, to help avoid the summer doldrums. She’s a shy kid, and it takes her a while to get comfortable in new environments, and with unfamiliar people. (This is one of many traits she inherited from me.)

We’ve tried a variety of different camps throughout the years, and she’s had fun at some, and disliked others. But no matter how much fun she has, she tends to insist that she didn’t like the camp in question, and refuse to return the following year. For example, last year she attended a very affordable, half-day camp in our town. It’s a pretty basic camp, with high school and college-age counselors, leading standard camp activities – crafts, games, and the like. Since it ended last year, my daughter has said she didn’t want to return to that camp this year because they “made me play tag.” She steadfastly maintained this resistance, even though almost all of her school friends are attending this camp this summer.

Instead, this year she wanted to attend a theater camp, offered by a great local theater organization, Saratoga Children’s Theater. Each week has a theme, and the activities throughout the week all relate to the theme. At the end of the week, the campers put on a show for parents. Last week’s theme was Frozen, so we were deluged with snowflake and snowman crafts, and got to see her sing several songs from the movie at yesterday’s show. It was adorable, and I’m pleased to share that I managed to get through the show without crying. (An unusual feat for this weeper, indeed!) Best of all, she seemed to have a great time at this camp! She’s returning for two additional weeks, later in the summer.

Sneak Peek at Next Week

Starting on Monday, our deck is being replaced. I’m overjoyed about this, since reading, sitting, and eating on our deck is something I love doing in the warmer months. We’ve known for a while that it needed to be replaced, so my husband started dismantling it early in the spring. This means it’s been out-of-commission all season, and I’ve really missed it. After gathering quotes from several contractors, we’ve finally selected someone to do the work, ordered the materials, and scheduled the work to begin!

How was your week? Did you do anything special for July 4th? Are you planning any big home projects for this summer?

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She’s Up for a Challenge

My daughter is HIGHLY motivated by rewards. As a Girl Scout this year, she was pretty disinterested in how many boxes of cookies her parents she sold, but very interested in what prize level she had achieved. (My behavior plan for this summer is an attempt to harness this tendency to get her to make habits of things I’ve been pestering her about for years.) As a result, I’ve got her participating in not one, not two, not three, but FOUR summer reading challenges, plus a summer math challenge, as a way to keep her academic skills fresh while school is out.

The last two summers, she has participated in the New York State Summer Reading Program at the Saratoga Springs Library, and she’s doing so again this year. We I track and log how many minutes she reads daily. Once she’s read for a total of 60 minutes, she goes to the library and reports on one of the books she’s read to a “Book Buddy”. After each report, she receives a “book buck”, which can be redeemed right away, or saved for larger prizes. She reported for the first time this year today, and chose to spend her book buck on a peace sign eraser. (Because if there’s one thing we need fewer of, it’s erasers.) Kids who read for 1,500 or more minutes over the summer are eligible for a grand prize. She’s never achieved grand prize status, but this could be her year…

The other summer reading challenges she’s doing are:

  1. From her teacher next year. She records the books she reads this summer, and will receive a glitter stick for each. The glitter sticks are redeemable for prizes.
  2. New York State Assembly’s Summer Reading Program. She tracks the number of days she reads (or we read to her) in July and August, then submits the form to our Assemblyman’s office, and she receives a certificate.
  3. Northshire Book Store Summer Reading Bingo. Northshire is a fantastic independent bookstore in Saratoga, and this program looks really fun. They provide a bingo card filled with age-appropriate reading and reading-related activities. She checks the boxes once she’s completed them, and brings her card in for prizes.

While it may seem a little over-the-top to have my not-quite-seven-year-old daughter participating in four summer reading challenges, there’s tremendous overlap among them. Whatever she reads can count for three of othe four, and some will also count for the last one (Northshire). Having prizes to help motivate her will minimize the prodding and arguing my husband and I will have to do to keep her reading this summer.

Are you kids participating in any academic challenges this summer?