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.

Weight Watchers Recap

I recently lost 15 pounds in seven weeks, on Weight Watchers. Here’s why and how I did it, and what it was like!

Why I Decided to Lose Weight

I’m an exercise-averse, mother in my early-40s. Oh, and I love good food. None of this bodes well for my waistline. I’ve actually noticed that my clothes have been shrinking for a while, but what really motivated me to lose weight now was my fear of facing my doctor at my next physical.

My husband and I have the same doctor, and we angrily jokingly refer to her as “the BMI Nazi”. (BMI = body mass index) Every year at our physicals, she calculates and reports our BMI. After getting by without any scolding in recent years, she berated me gently suggested that I should lose a few pounds. She said I wasn’t “technically overweight”, but noted that I had gained 12 pounds over the last four years. Gulp. (She’s incredibly petite, by the way.)

Why Weight Watchers

The concept behind Weight Watchers – and weight loss, in general – is simple: eat less and move more. In theory, I could just cut back and track my calories on my own, but in practice, it simply doesn’t happen. Just keepin’ it real, peeps.

I had lost 27 pounds with Weight Watchers about a decade ago, and remembered finding it quite easy and painless. I like the online-only option, since I don’t need the mentorship or social support. I really just need the framework and tools. (Structure is my middle name.)

What It Was Like

When I started, my goal was to lose 12-15 pounds. I’m about ten years older than the last time I did Weight Watchers, and this seemed like a more realistic goal. In addition to be younger the last time, I also hadn’t had a baby, yet, and I lived in NYC at the time, and walked A TON. Now I drive everywhere, and have a very sedentary job.

I’m really glad that I set this more realistic goal, because I had a much harder time this go-around. Basically, I was hungry – or at least very unsatisfied – the entire time. I was used to eating large portions of pretty much anything I wanted, so cutting back was a big shock to my system. I’m still traumatized by all the scrambled egg whites I ate in the first few weeks, and I never want to see unsweetened applesauce again!

Did I Cheat?

We took a quick weekend beach trip a couple of weeks after I started, and I wasn’t going to deny myself the pleasure of eating fried clams at the ocean! I also went out to eat a couple of times, and just tried to make sensible choices. For example, right before I hit my goal, the three of us went out to celebrate our anniversary. I started with a salad, ordered grilled salmon, took only a couple of bites of the accompanying mashed potatoes, and had only a couple of bites of the delicious dessert. So while I did technically cheat, I never went crazy or let loose completely. This is not because I’m virtuous, but simply because I wanted to get through the Weight Watchers torture plan, as quickly as possible.

I only had two, small bites of this delicious dessert!!

What Were My Results

I hit my goal of losing 15 pounds, and my clothes did start to fit more comfortably. In fact, my pre-Weight Watchers-size clothes are now loose, and I’ve had to purchase some things in a smaller size.

Moving Forward

I’m still weighing myself a few times a week, because I need to figure out how much I can eat to maintain my new weight. I’ve decided that I’m happy if I stay within a three-pound range, and so far that hasn’t been a problem. I do eat less than I used to, and I’m still measuring some things to control my portions. I have eased up on some things, like I no longer measure out the milk for my coffee. (Wild, I know.) I don’t snack very much anymore, and I think that makes a huge difference in my calorie consumption. Also, I’m not eating very many things that are technically “healthy”, but more calorie-dense, such as nuts and cheese.

This is working well for me now, but I’m a little concerned about the upcoming Halloween, Thanksgiving, and Christmas holidays. I’m planning to maintain this more balanced approach, and hope that I can stay at my new weight without feeling too deprived.

Do I recommend Weight Watchers? Absolutely. It’s a clear and simple program, that’s great for people who like structure. Is it fun? Definitely not – but it works.

How have you lost weight in the past? Have you tried Weight Watchers? What did you think?

Stonewall Kitchen, LLC

Monday Meal Plan #46

Happy Monday! I hope you had a fantastic weekend!

Weekend Recap

We spent the weekend at my parents’ house in Orange County – New York, not the other OC. My daughter’s eighth birthday is later this month, and this weekend we celebrated it with family.

My parents’ house is the most centrally located for family gatherings. My extended family members drove up from New York City, my in-laws drove up from New Jersey, and my sister and nephew drove down from their home outside Boston. Because my daughter and nephew absolutely love spending time together, my sister and I met at my parents’ house Friday evening. The kids played together every, single moment! This allowed us to catch up and finalize party details, including hanging some decorations.

On Saturday morning, my husband picked up the food for the party. (We tried a new-to-us restaurant/caterer in my parents’ town.) Guests started arriving just before noon, and it was very nice to see family members. We had lunch, cake and other desserts, and my daughter opened her presents. She received a great mix of lovely, homemade items, toys and other goodies she’s been wanting, and money for her piggy bank, savings account, and 529 account.

Yesterday, we hung around at my parents’ house until the late morning, then got on the road back home. We arrived home around 2:15, unpacked all the birthday loot, and had some party leftovers for lunch. We’re expecting our first frost tonight, so I pulled all of my veggie plants out of the straw bales, and got some spring bulbs into the ground.

The Week Ahead

Yeeks – starting this week, I’ll be working four days per week! (Yes, I can see those of you who work full-time rolling your eyes at me!) I typically work two or three days per week at my primary job, and I’m adding a second, part-time career counseling job at a second college. I’m filling in for a woman who’s going on maternity leave, and I’ll probably be there into March.

I’m very used to spreading my errands and chores out over my non-working days, so this new schedule is going to take a little getting used to. It also means that having a meal plan is going to be especially important.

In addition to me working four days, my daughter has a “half day” today. (They’re only in school for two hours, so “half day” is a little generous.) She also has Friday off, and my husband will be working from home that day to be with her. She also has gymnastics on Wednesday evening, and we’re hosting a sleepover birthday party with a couple of her friends on Saturday.

This Week’s Meal Plan

I’m a sucker for a good deal, and our regular and chest freezers are now completely full. As a result, we’re eating out of them this week. Here’s what’s for dinner at my house:

  • Monday: Pasta w/ meatballs and garlic spinach
  • Tuesday: Leftovers (If there aren’t enough leftover meatballs, I’ll make some meat sauce that’s in the freezer.)
  • Wednesday: Maryland crab cakes w/ Israeli cous cous and frozen peas
  • Thursday: Shrimp and veggie stir fry w/ jasmine rice
  • Friday: Leftovers
  • Saturday: Birthday dinner – pizza and mozzarella sticks w/ veggies and dip (And ice cream cake, of course!)
  • Sunday: Birthday party leftovers

What’s for dinner at your house this week??

My Goals for 2017: Check In #9

Some people are motivated by rewards. Some people are motivated by fear. Others are internally motivated. Me? I’m motivated by public shame. I do not want to be embarrassed, and that’s what typically gives me the push I need complete things. (I’m what the author Gretchen Rubin would call “an obliger”, based on her personality framework.)

It helped keep me focused when I trained for two marathons in my younger years. I joined Team in Training, which, in exchange for participants raising funds for the Leukemia and Lymphoma Society, provides coaching, support, and organized, group training runs. Those group runs were critical for me – in particular the weekly “long runs.” Knowing that I would be running 16 miles with a group on Saturday, helped keep me motivated to train on my own throughout the week. I knew I’d never be the first, but I really did not want to be the last person to finish the long runs.

What does this have to do with my 2017 goals? I’m using this motivation to help keep me on track with my goals. I’m sharing monthly check-ins on my progress to keep me focused, and as a form of accountability.

2017 Goals Check-In #9

(You can read more detailed descriptions of each of my goals here.)

Goal #1: Read at least 24 books that I truly want to read.

As in August, I didn’t make much progress on reading in September. I started reading a book my father recommended – American Pastoral – but just could not get through it. I’ve heard other people rave about this book, too, but the style just didn’t suit me. I need more plot than this has, to hold my attention. I also started reading, What Happened, in September, and I’m about halfway through it. You can see all of my 2017 reads – current, past, and future, plus those that I couldn’t get through – here.

Goal #2: Try at least three new (to me) activities, preferably active ones.

After making good progress on this goal in August, I didn’t try any new activities in September. I did, however, spend the entire month doing Weight Watchers. I started in mid-August, set a goal of losing 15 pounds, and achieved it early this month (October). I did Weight Watchers for the first time about a decade ago, so I can’t claim that it was new to me this year…

A highlight of my September: meeting the Beekman Boys!

Goal #3: Run at least three 5K races. Get 150 minutes of activity every week.

(I changed this goal a couple of months ago, and you can read my explanation for it here.)

Thanks to my FitBit, I’m able to track my minutes of daily activity and exercise. I did extremely well with both metrics in September! It helped that my daughter started school at the beginning of the month, so I was able to walk during the day, on most days.

Goal #4: Find a way to dread meal planning/cooking less.

I’m finding that I don’t dread meal planning as much as I used to. I did a good job of creating meal plans and trying new recipes in September, despite the fact that I was doing Weight Watchers.

How are you doing with your 2017 goals or resolutions?

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