Why Walk in the Buddy Walk?

Why walk for Down Syndrome awareness?

It's Buddy Walk time! If you would like to join Mer's Bears at the Lehigh Valley Buddy Walk on Saturday, September 26, at 2 pm, sign up now!

If you're not sure WHY we do the Buddy Walk, you're probably not alone. In fact, there are times when I wonder too. Here's why I am walking this year:

I am walking for health! We are extremely fortunate that Meredith has not had any major health concerns related to Down syndrome. Unfortunately, this is not the case for many children, many of who undergo heart surgery at a very young age. The Eastern PA Down Syndrome Center helps parents manage the medical concerns associated with Down syndrome from the beginning and serves as a resource for questions and connections to therapists as developmental questions arise. We also walk because we CAN walk! Did you know that one of the major challenges children with Ds encounter is hypotonia, or loose, floppy muscles? This is why children with Ds need the support of physical, occupational, and even speech therapists (because the tongue is a muscle!) to develop skills typically developing children pick up much faster. It was not so long ago that new parents of children with Ds would be told that their child would never learn to walk or talk...and thus many were institutionalized. The early intervention of therapy (beginning as early as about 6 weeks!) has played a major role in helping kids with Ds develop these skills more quickly...so much so that Meredith could probably dance her way through this walk! 

I am walking for advocacy. As Meredith enters kindergarten, in a mainstream classroom in our community school, with a one to one teaching assistant, I can't help but think we have won the educational jackpot. She is getting the supports she needs in the social and academic environment that is appropriate for her! I also can't help but think about what special education was like when I was in school...how students with any disabilities were isolated from their peers and often not even exposed to the academic curriculum...and how their parents might have been thrilled just because they were allowed to BE in school at all. Today, we benefit from their fights, their tears, their work for inclusion in the schools and in the community. We walk gratefully for the advocacy done by previous generations and with a promise to do more for the next generation.

I am walking for community. Being a child with a disability can be lonely. Being a parent of a child with a disability can be lonely too. The Eastern PA Down Syndrome Center builds a network for families of children with Down syndrome to support each other with issues specifically related to this aspect of our lives. The other community is more important though: we are so lucky to have friends who include our family in birthday parties, play dates, dance activities, and chatter after school. If you don't know us well, yet, come join us at the walk! 

World Down Syndrome Day

Today, March 21, is World Down Syndrome Day. If you're wondering, "Why today?" it's because the date is 3-21...3 copies of the 21st chromosome...get it?!
Anyway, this morning, as I wondered what to do to celebrate and spread awareness, I thought about person-first language and about something I hope you already know to be true for yourself:  No one descriptor, no single role, defines who you are.
The same is true for Meredith.
So, in the spirit of the day and celebrating all 47 of her chromosomes, I offer you 47 ways she might describe herself.

1. She reads voraciously.
2. She dances any time of day.
3. She tucks her baby dolls in for nap.
4. She wakes up early.
5. She pushes her bedtime.
6. She spins in circles while she sleeps.
7. She scribbles with crayons.
8. And sometimes she bites them. 
9. She amuses her brother with peek-a-boo.
10. She cooks eggs with her dad for breakfast.
11. She folds laundry with her mom.
12. She writes the alphabet on her iPad.
13. She hugs the vacuum cleaner.
14. She cheers for women's basketball.
15. She watches Sesame Street.
16. But she prefers Super Why.
17. She reserves the right to be particular about her food.
18. She wants soft pretzels.
19. She asks to be excused after meals.
20. And then she stacks the chairs at her table.
21. She swings.
22. She slides.
23. She puzzles.
24. She blows bubbles
25. She squishes Play-Doh.
26. She accepts bribes of stickers.
27. And chocolate.
28. She knows the letters of the alphabet.
29. She counts--sometimes with all of the numbers and sometimes by the "skip a few" method.
30. She likes bandaids on her boo-boos.
31. She kisses other people's boo-boos to make them "all better."
32. She sings in the stroller.
33. She sings in the car seat.
34. She sings while she's getting her hair dried.
35. She attends preschool.
36. She makes a plan--it's usually "table tops."
37. She thrives on routine.
38. She bends into super flexible positions.
39. She listens and follows directions.
40. She ignores directions and pitches a fit. 
41. She anticipates Thursdays for our trips to the library and dance class.
42. She shops at Target.
43. She shares her toys with her brother.
44. She snatches toys away from her brother.
45. She apologizes with a hug and a kiss.
46. She dotes on her cousins.
47. She has Down syndrome. 

Down syndrome is a part of her life, and of all of our lives, but it is only a part. And, when you compare it to all the other things she DOES, this thing she "has" really isn't that exciting.
So today, help spread awareness about Down syndrome. Make a donation to a support organization. Listen to a new parent talk about their joys and challenges. Read a book about Down syndrome to kids. And remember that no single label...Down syndrome or otherwise...tells the whole story about who a person is.

Rebalancing Meals

     Anyone who has had the pleasure of dining with us knows that meal times with the Meyer family are, in short, stressful. Though we are not at a point where Meredith is eating like a typically developing 3 year old, we have made great progress in the last year and learned a lot about what helps a meal time be successful FOR US. I share this in the hopes that it might help someone else who is struggling with eating issues--either by providing thoughts on a new approach or simply by providing comfort in knowing that you are not alone and that it will get better.
      Originally had these great dreams of cooking all our own baby food and being quite natural about we fed Meredith. We pureed peaches and pears, tried making our own oatmeal from oats instead of using the boxed stuff, and introduced solids to Meredith at about 6 months. Looking back, I can say with absolute certainty that SHE WAS NOT READY. Even with a special chair provided by the physical therapist and multiple suggestions from a speech therapist, many of the bites that went in, came right back out. By the time she was a year old, she was finally starting to swallow purees, but meal time was literally show-time at our house. We sang songs constantly while spoon feeding her and even employed those cute little singing stuffed animals as distractions for when we just couldn't do another verse of Old MacDonald's Farm on our own. This worked for a while--by which I mean Meredith built up a repetoire of about 6-8 pureed foods that she ate--but we pretty much stalled there.
Somewhere over the course of introducing foods, Meredith learned to eat marshmallows...and we rejoiced! We thought they would be the key to introducing puffs and Cheerios and yogurt melts--all the typical first finger foods for toddlers--but, unfortunately, they were just marshmallows. A much loved treat, but not the gateway snack we hoped they would be.
    When Meredith was about 2, we finally pushed for and received help from an occupational therapist to address the sensory issues we were fairly certain were the underlying cause of Meredith's struggles with eating. At about that same time last summer, though, as we prepared for our move to Pennsylvania, between us being busy, stressed parents and Meredith being stressed by our stress and distraction, she not only failed to make any progress with foods but regressed to eating pretty much just yogurt.
     Luckily, with our move to Pennsylvania, Meredith's therapy schedule increased and she was paired with an occupational therapist (OT) who has an incredible amount of experience working with children (and parents) who are experiencing feeding difficulties. Here is a summary of what I have learned:

• There is a heirarchy of tolerance regarding food--see, touch, smell, taste (or lick) and then eat. Children first need to literally be able to accept that a new food is going to sit on their plate and stay there. Then they need to touch it to learn what it feels like--they have to be comfortable with what it feels like on their hands before they will be comfortable with it in their mouth. Then they need to smell it--some smells might be really offensive to certain kids at first. They they need to be allowed to lick or taste the food without any pressure to actually consume it. Eventually, once they master that, they may be ready to try eating the food. Certain steps will be more critical to your routine depending on your child's needs and where they are with eating in general...lower level steps will be more important to a child just learning to eat than one who is more comfortable trying new things. However, there will be days where some or all of these steps need to be re-emphasized even with foods your child ate without a problem the day before. (Touch is big for us! We often find that if Mer refuses a familiar food, it is helpful to ask her to finger feed a bit to one of us--messy, but it encourages her to touch the food without being asked to eat it. Often, after one turn for Mom or Dad, she is ready to take a turn eating the food herself.)
• Kids need to know exactly what they are expected to do when they put food in their mouths...and what will happen to the food. This was the first BIG key to success for us...I sat and watched as our OT picked up a bite of a veggie straw and put it on her tongue. She then showed Meredith how she moved the bite over to her molars and crunched on it with her teeth. She had Mer listen to the crunch she made and made a big deal over the sound--"Listen, it crunches!" She also specifically pointed out the "chewing teeth"--both on herself and on Meredith--so she would know not to try to chew food with her front teeth. For a long time we practiced with crunchy food--beginning with yogurt melts broken into thirds and veggie straws and pretzels. Then we introduced squishy foods--like yogurt covered raisins and dried blueberries. Other things have come along since then, but all are generally classified as "squishy" or "crunchy" before being eaten.
• Sauces are amazing--we have been fairly successful at using sauces, such as ketchup, bar-b-que sauce, and Nutella to bridge the gap between similar foods. For example, hot dogs were the first meat that we introduced Meredith to--and we did so covered in ketchup. Since then, we've added sausage, meatballs, and ravioli (not a meat, but a main dish) all covered in ketchup. When I recently introduced chicken nuggets, I said something to the effect of, "We're going to try this. It's chicken nuggets--it's a meat, like a hot dog, and we're going to eat it with ketchup," and it went quite well! Sauces can also soften and hide the texture of foods--like the crust of chicken nuggets--letting your child be successful with a new food while softening some of the challenges it might present. The amount of sauce you use can always be reduced as your child gets more familiar with the food itself.
• Introduce foods that are similar to something your child already eats in some way---color, texture, shape. 
• Offer really small bites of new foods or foods with funny textures. Really small. Like can only fit on one tine of a fork small. More than that might be overwhelming to your child's mouth.
• Begin the meal with foods your child feels comfortable with and serve as a warm up to the meal. For example, we started all meals with 3 or 4 "crunchies" of some sort (yogurt melts or veggie straws) for a long time. This was a "safe" food that got Meredith used to the idea that she was going to be chewing things that would crumble in her mouth during the meal. If she is trying a new food or is particularly resistant to a food at a certain time for any reason, we often go back and try this again and then move on to the new food.
• Be aware of the level of other sensory input in the room. For ages, I thought Meredith didn't like crunchy or crumbly foods. As it turns out, she does--they just provided input that she didn't know what to do with. Yogurt provided almost no input--it was so smooth--so she had very little to react to and could eat it anywhere, regardless of how loud or busy the place she was eating was. In fact, our singing probably allowed her to almost forget she was eating at all because it distracted her from what she was doing. (Yogurt is, by the way, still the back-up food at daycare where she eats with 10 other 2-year-olds!) However, if she is eating in a familiar, relatively quiet place, she is more likely to be able to handle the sensory input of foods with texture--and it provides enough input that she doesn't need a lot of distraction to eat. In fact, if you try to get her to eat foods she is only partially comfortable with at a loud, busy place, she is likely to not even tolerate the food on her plate.
• Keep in mind that meal time is work and is stressful for your child--and it shouldn't all have to be therapy. Some days you'll try new things--others you'll go with the comfortable favorites. Some days your child will work on physically feeding herself--other days you'll man the fork or spoon. 
• Don't make meal time a fight. You hear this everywhere, but it is so true. Set a timer--kids are probably only going to be engaged for about 20 minutes anyway and if you try to drag it out until they've eaten "enough", you're both going to be miserable. Celebrate small victories--let your child know how proud you are of them when they touch or taste a new food for the first time--even if it doesn't get swallowed! Make it funny--when food slips off the fork, talk about how silly that is, rather than groaning at all that wasted effort.
• Focus on small goals that are important to you and your family. I would love Meredith to eat vegetables other than pickles, but right now it's more important to us that she learn to eat a few of the kid friendly meals offered at daycare and restaurants, like macaroni and hot dogs. This past February, as I was starting to think about Mer's upcoming third birthday, I decided I wanted her to be able to eat cake at her party--she had never really done much more than tolerate seeing it on her plate before. Our OT helped us build off of her love to chocolate to introduce chocolate chips in a cake and then really fudge-y brownies and finally chocolate cake before the big day so that she could be successful enjoying her own cake after the candles were blown out.

     Meredith now eats pancakes with syrup (and some days Nutella) for breakfast and a meat and a fruit for most lunches and dinners at home. She is working on "poking" the bites on her plate with her fork by herself--she can do this by herself but it gets tiring and makes for a long meal. She currently drinks from a straw-bottle but is learning to drink from a cup with support. We have a ways to go, but I feel like we are making slow and steady progress toward her being able to eat appropriate food in an appropriate manner with her friends at the lunch table by the time she gets to kindergarten!

Re-Balancing

It has been so long since I've written, I don't even know where to begin.

Well, maybe I do.

I've been writing this post in my head for the last month at least, probably longer. So much about our lives has changed since January 21, 2012, which is, apparently, when I last posted. So, here's the plan: Today, I'll give you an update on WHY there's been much re-balancing in our lives and how that has affected me personally. Soon (hopefully this won't seem so daunting after today) I'll try to give you some updates on other areas of our lives.

The long and the short of the spring of 2012 is that last June Greg accepted a job at Lafayette College in Easton, PA. On a personal level, we were thrilled with this opportunity since it is an area that we were already familiar with and it brought us closer to Greg's family. I should also mention that this job came with an offer of on-campus housing--a perk to be sure, but an adjustment that probably deserves its own post. (Re-balancing Living Space)

I have to admit, though, that the move threw me for a loop. It brought with it all of the heartache typically associated with moves--saying goodbye to neighbors, friends, and colleagues, as well as my students (who I had planned to loop up to the next grade level with). My mantra quickly became, "How lucky I am to have worked (lived, played) with people who it is so hard to say goodbye to." But, it still hurt...

Another shock came when, after being here for less than a week, I opened the newspaper to find out that the local school district was laying off ANOTHER 125 teachers after a previous 75 or more earlier that spring. There would be no hoping to fill a last-minute vacancy around here...

In the spirit of making lemonade, though, this year has presented some definite perks.

• I learned that I like baking and got to do quite a bit of it!
• We've made new friends and found that we have more babysitters available than we do date-nights.
• I made my own schedule while substitute teaching in the local schools (a great way to really get to KNOW a school before you send kids there or work there). 
• With the help of some very understanding professors, I fast-tracked my reading degree and finished in May instead of this next December.  
• I enjoyed some slow days during my pregnancy with our son--no pre-planning weeks of lessons before delivery and no puking in the classroom bathroom this time around! 
• And, above all else, I got to stay home with Meredith two days a week. If there is anyone the move has been good for, it has been Mer Bear. (Re-balancing Support)

The "problem" is that all of this change has lead to a great Re-Balancing in my life and as the roles of my life change, I am wobbling...

Wasn't I wobbling before?!

Strong Women

So, for those of you who don't know us well, in the past few years Greg and I have become big fans of JMU's women's basketball team. It all started the first year I was living here in Harrisonburg and we were trying to "get involved" in the community and the university.
Since then, we've become slightly obsessed. Like, we joined the Crown Club, watch away games via the internet, and, of the 2 personal days I get from work this year, 1 will be used to go to the CAA women's basketball tournament in Maryland. If it's not obsession, it is, at least, commitment.
I like the basketball games for a lot of reasons. It's a competition and a team to cheer. It's something to look forward to on winter evenings. It's a family friendly atmosphere at the games. It's a super deal (less than $100 for two adults for the year!).
And, it's a super message being sent to my daughter.
Watching women's basketball presents an in-your-face juxtaposition of what being a woman means.
It's watching women in jerseys and tennis shoes race up and down the court for 40 minutes. During this time they run plays as a team and shoot foul shots all on their own. They scramble for rebounds and get the ball stolen out of their hands. They fly through the air gracefully and get pushed to the ground, catch some lucky breaks on foul-calls and get busted on others, make miracle 3-point shots at the buzzer and miss gimme layups. These are strong women, beautiful women, successful women, and yet their style of femininity flies in the face of everything girls are taught about being "lady-like" while they are growing up.
However, when the buzzer sounds to signal a time-out, a totally different picture of femininity takes the court. As basketball players catch their breath and strategize the next play, cheerleaders take center court, jumping, flipping, and cheering their peers on toward victory. These women are as strong and agile as their ball-shooting counterparts: lifting each other up in the air, doing backflips from a dead stop in the middle of the floor, bending and stretching their legs into all sorts of shapes. Wearing make-up and ribbons in their hair, though, they present a much more typical picture of womanhood.
What I want Meredith, and lots of little girls and boys, to know is that both represent an awesome way to be a woman--as do the many gradations of femininity between these two seemingly extreme positions. And, I want her to know that these two positions are not as far away from each other as they may seem. Both groups of women are healthy and active, involved in their community, well-educated, hard-working, and striving to be the best they can be as individuals and as a team. If that's not a positive message, I don't know what is!

Like squishing a bug...

Maturity rears its ugly head again today...and it's like the day you finally squish the bug yourself.
I remember receiving a call one summer evening when I was on vacation and my sister was staying at my apartment. She had barricaded herself in my bedroom and was calling to find out what to do next...a superbug of sort, maybe a flying cockroach, had made its way into the apartment and made my poor sister its next target. Sadly, from 2,000 miles away, there was not much anyone could do to help her except offer suggestions. It took a while, but being the brave, capable, independent young woman she is, she eventually solved the problem and was able to take full ownership of the apartment again. (For those wondering, I believe the solution involved an arsenol of household aerosol products--not exactly eco-friendly, but efficient.)
Maturation is really just a series of events, like squishing bugs, that you are initially accustomed to passing off to someone else (your parents, a college roommate, your significant other) but that you eventually take responsibility for yourself. Laundry, dishes, and changing the toilet-paper roll are all little milestones on this list as well.
Sick babies present opportunities for personal growth as well. At least, that's how I'm choosing to look at the situations that Little Mate Mer's tummy troubles presented today.
Fingers crossed that there won't be any other such opportunities tonight and I can revert back to a younger, less responsible version of myself in the morning!

"Thanks"giving: Catch-up!

"Thanks"giving: Day 15: Dinner Out!
    A Tuesday night dinner out is always a treat, and, when it's Mexican food, all the better! Dinner with friends and their little girl tonight was awesome great...so nice to relax and chat about kids, work, etc. So grateful!

"Thanks"giving: Day 14: Classes
   I'm so grateful for my writing classes on Thursday nights this semester. It's such a nice opportunity to talk to other teachers about the new things they're doing in their classes--there just isn't time for many of these conversations on a daily basis. I'm also grateful for the ongoing support and troubleshooting as I try using Writer's Workshop in my classroom this year.

"Thanks"giving: Day 13: Text messages
    Actual conversation with the babysitters watching Meredith Saturday afternoon--
Me (from my crazy out of area phone number): Just checking in...how's Mer doing? ~Katie
Sitter (response in less than 30 seconds): Wrong number.
My thoughts: Ok, minor panic, but, that's why we have 2 sitters, 2 phone numbers.
Sitter (less than 1 minute from when initial message was sent): Oh, sorry...she just woke up from nap. Not eating much, but drinking her milk.
Me: LOL...
    I really am grateful for the sitters we have worked with this semester...but I am just as happy to have had this conversation. It so made me smile! Even the tech-savy college kids make make bobbles from time to time.

"Thanks"giving: Day 12: Visitors
  Loved having company this past weekend! It's nice to see family, hang out, and show them some of the sites of H'burg.

"Thanks"giving: Day 11: Computer Lab
   It makes my Fridays so relaxing! :-)

"Thanks"giving: Day 10: Special Educators
   So thankful for all of the wonderful people who work with Meredith and also provide support for Greg and me. They are our teachers, our resources, our coordinators, and our cheerleaders and their knowledge is absolutely amazing!