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Monday, October 14, 2019

I Am ...

A fellow mom from the Down syndrome community put together a wonderful video for National Down Syndrome Awareness Month.

This video features teens with Down syndrome sharing what they are - i.e. swimmer, kind, smart, strong, a star.

Kayla, my *fearless* girl, makes an appearance at :58 seconds in. Check her out!

Wednesday, October 02, 2019

On Her Own Time

Kayla recently joined the Special Olympics Track team. She also recently got a fitness watch. The watch can track walking, running, biking, and sleeping. She likes to press the "bike" icon before we head out on our usual morning bike ride (PE time!) even once coming to a sudden stop in front of me and yelling "I forgot to start my watch! (on bike mode)"

Oh this child of mine cracks me up. At this most recent track training session she was lined up to run ... and she got distracted making sure she was putting her watch to the "run" setting. She completely ignores the "GO" and instead stands at the line making sure she is getting her watch set correctly. It's not that she didn't hear the "GO", it's not that she couldn't hear the "Kayla, go!" ... it's that she wouldn't go until her watch was ready for "RUN". She is definitely on her own time, haha! Good thing this wasn't an actual competition!


As much as that first video makes me laugh, this next video warms my heart. As she is concentrating on her own run she makes sure to encourage and cheer on the runners coming the opposite way.


This is her first year on the track team (she has previously been on the Running Clubs at her elementary and middle schools) but she generally doesn't seem to have a lot of stamina to keep running ... she's more like a short sprinter and then a walker. So I was surprised when I saw her go the distance during this training run and not stop to walk at all (twice). I was also surprised when I asked her if she wanted to join the track team and she enthusiastically responded with, "Yeah, I love to run!" Cue to me giving her the side-eye look.

I'm excited to see how far she'll progress during training and what she'll do at Spring Games!

Tuesday, October 01, 2019

Down Syndrome or Trisomy 21

Today, Oct 1, is the start of National Down Syndrome Awareness Month.

For 10 years I participated (and later hosted) the annual 31 for 21 blog challenge. I didn't do it last year and I doubt I will put up 31 posts this month.

I do miss doing it, but over the years interest and participation waned; and most people now just use FB, Twitter, and/or Instagram to post a daily picture or fact about Down syndrome.

After 10 years of 31 for 21 and 13 years of blogging in general I'm not sure what more I can blog about anyway. What more about Down syndrome can I write about? How much more awareness and acceptance can I preach about? And aren't I just preaching to the choir anyway?

I did read an article in a local magazine that was timely enough for me to put up at least this post for the start of National Down Syndrome Awareness Month.

This paragraph got me thinking about a few things:


This describes the latter two of Trisomy 18 and Trisomy 13 being caused by extra chromosomes but it doesn't mention anything about what Down syndrome is. It also seems to separate Down syndrome as one thing and T18 and T13 as a different type of condition when they are all essentially very similar and they are all caused by having a third copy of their respective numbered chromosome. So it's not just the 'latter two" that stem from an extra chromosome.

It also got me thinking about the language used to describe each condition. Down syndrome is also Trisomy 21 but very rarely referred to as such. Trisomy 18 and 13 are also called Edwards and Patau syndromes but seem to be more frequently referred to by their trisomy diagnosis. I wonder why that is. Is it because Down syndrome is more widely known because it's more common?

I noticed even national (and international) organizations all use Down syndrome. I don't know of all the organizations for T18 and T13, but did find the Trisomy 18 Foundation (and most of the search results for other websites more often than not use T18/13 instead of Edwards/Patau syndrome).

I got curious and started digging a little more.

Down syndrome is named after Dr John Langdon Down who, in 1876, described a similar set of characteristics that people had, but it was Dr Jerome LeJeune who discovered, in 1958, that people with those characteristics all had a third copy of chromosome 21.

Patau syndrome was first observed by Thomas Bartholin in 1657 (!!) but the third copy of the 13th chromosome was discovered by Dr Klaus Patau in 1960. I wonder if it ever called Bartholin syndrome and later changed to Patau syndrome? Or even though it was observed by Bartholin was there never any specific medical diagnosis name given to it until Dr Patau discovered the third copy of that chromosome?

All I could find out about Edwards syndrome is it was first described by John H. Edwards in 1960.

Language can and does change throughout the years. Dr Down used the term "Mongolism" to describe what we now know is Trisomy 21. It wasn't until the early 1970s that Down syndrome was more widely accepted - even though 12 years before that Dr LeJeune discovered the extra chromosome! So why start calling is Down syndrome at all by the 1970s; why not call it LeJeune syndrome, or, as with Trisomy 18 and 13, refer to it as the trisomy that it is?

I also wonder if years from now the term Down syndrome does fade away and it simply becomes more commonly known as Trisomy 21 will there not be as many preconceived notions/ideas? Will people think of something else when they hear "Trisomy 21" than when they hear "Down syndrome"?

Lots of random thoughts from that one little paragraph!

Saturday, September 07, 2019

The Root Beer Float Challenge

Over the summer I received an email about a new game coming on the market from Playtacular called The Root Beer Float Challenge.

I was intrigued, but I admit I was also thinking our game closet really doesn't need another board game! I'm glad I decided to take a chance on this game (disclaimer: I received a complimentary game) because this isn't just any board game - it's not a "board" game at all. This is a get-out-of-your-seat and complete challenges game. I like that this is an active game as it puts a new spin on a traditional family game.

The object of the game is to be the first person to collect all the pieces for your root beer float: ice cream, root beer, cherry, and straw. The pieces are cards with those images. You collect the pieces by succeeding in various challenges using the ice cream "ball", cherries, straws, and tin canister that everything stores neatly inside. and the challenges are either done solo, head-to-head (you pick someone to compete against) or cooperative (you pick someone to do the challenge with).

There are 120 challenge cards and much hilarity follows! Try placing the ice cream ball between your knees/thighs and walk so many steps to squat and drop the ball in the canister! I looked so funny waddling over to the canister trying not to drop the ball and everyone was laughing so hard I almost peed my pants!

We brought this game on our road trip this summer (easy and compact to travel with) and played at my mom's house; everyone had a great time and got a lot of laughs out of it. When we were home Lucas had a couple friends over and couldn't wait to show them and play a game.

This is a great family game geared towards ages 8+ and for 2-8 players. It would be great for a birthday party!







Monday, August 19, 2019

Another School Year ... Another Decision

Last year when we made the decision to homeschool Kayla it was mostly with the intent of doing it for 9th grade. Our plan was to then re-apply to the Catholic high school we had thought she would attend in 9th grade and hope that she would get in this school year.

The application process opened last Oct/Nov. It was just a couple months into the new school year and our new adventure of homeschooling, but I wanted Kayla's input. I asked her if for 10th grade she wanted to continue homeschooling or go to this other school. She immediately said "Keep homeschooling!"

I really wasn't sure if she realized what I was asking, considering it was about 9 months away ... and did she really understand that I was talking about something so far in the future. Not go to the high school now, but next school year. Thinking that far ahead is kind of abstract for her. I kept emphasizing I was talking about 10th grade. She kept saying homeschool.

This really did surprise me because she has always enjoyed going to school and being around her classmates. Kayla is usually not consistent with her answer either - if you keep asking her the same question she'll give you different answers. Over the next several months, some times several times a week (ok even several times in one day) I would ask her what she wanted to do. 90 percent of the time she said homeschool (and she's usually never consistent like that). The few times she said she would go to the high school it was with a sigh, like she was resigned to going, or that she thought that was the answer I wanted to hear since I kept asking the question. She never said it like she was excited about it.

I tried having conversations with her about what she liked about homeschooling, or why she didn't want to go back to a school building. Conversations like that are hard for her, it's hard for her to articulate exactly what's going on in her head. She did tell me that "there are too many kids, it's too loud and I can't concentrate and get frustrated." She's never expressed that before. Ever. I wonder if once she was out of the school environment and it was just us at home doing school work if she realized the difference.

I continued with the application anyway; I didn't want to fully close that door in case the closer we got to the end of the school year she might change her mind.

And she did get in. She was offered a spot for the incoming freshman class. She steadfastly maintained that she wanted to homeschool - even after being told her BFF would be going there.

This decision ate at me for months. Just like it did last summer when we were trying to figure out what we were going to do. I went back and forth, pros and cons. Do we just go ahead and enroll her since she got in? She has always adjusted well to transitions and new changes and I'm sure that if we talked it up and were encouraging about it and once school started she would have jumped right in and probably enjoyed it.

But the truth is, I found that I was enjoying the homeschool thing, too. It was ... relaxing. No more stressing about homework (which was a big stressor through middle school and I knew it would only get more so in high school).

So we are continuing on with our homeschool journey. I do second-guess myself, I always will. I always do about everything! I worry that she's 'missing out' - on what exactly that is I can't say, but just the whole experience. But she's involved in things in our community. The homeschool archery team, an acting class she took all last year (and will again this year), a new Fit Kids class and monthly art class she'll do this year.

She's happy about homeschooling, and that's important to me. So here we go again ... welcome to 10th grade!



I also offered to homeschool Lucas (as I did last year, too), but he wanted to continue going to his school. He said he would miss his friends there! It's a good fit for him and he's happy with his school choice as well. This school year brings new beginnings and more responsibilities for him as he is now in MIDDLE SCHOOL! I can't even believe it.

6th grade here he comes!




Monday, August 12, 2019

PLAY Campaign at Fenway Park

One of the reasons we went to Boston was for Kayla to participate in the 3rd Annual PLAY Campaign (Promoting a Lifetime of Activity for Youth). This campaign is from the Professional Baseball Athletic Trainers Society (PBATS), the Taylor Hooton FoundationHenry Schein Cares, and the National Down Syndrome Society.

This program takes place at several Major League Baseball parks across the nation and brings together kids of all abilities for an inclusive, on-field, educational and athletic clinic with the PBATS.

When I first heard about the program a couple years ago and realized the Red Sox were one of the participating teams, I was so tempted to jump on a plane and take Kayla! However, she was at camp so the dates just didn't work out. This year when I saw the email about the upcoming campaign I wasn't really expecting that we would go, but just for fun I checked the schedule to see when they would be at Fenway ... and it was July 15, Kayla's birthday. The Red Sox were also in town and would be playing a game that night. Everything was telling me to GO! Don't miss this opportunity!

It's no secret that I'm a huge Red Sox fan (and of course raising my kids as such!) and I've wanted to take them to a game (we did see the Sox play the Braves in Atlanta a few years ago, and we also went to a Greenville Drive game - minor league team of the Sox here in Greenville, SC). But, FENWAY! This would be not only going to a game at Fenway, but getting to experience Fenway up close and personal.

A road trip would also give us a chance to stop in CT and visit with my dad's side of the family (which, again, timing was perfect for this as the day we stopped by was the day after the 7th anniversary of my dad passing away. It was so good to be with his family).

So! PLAY Campaign! It was such a neat experience and I'm so glad we made this opportunity happen for both Kayla and Lucas (siblings were able to join in on some of the activities) ... and I lived vicariously through them :)

We made it! Fenway Park!


Another bonus was getting to hang out with a friend I met via blogging years ago; she signed her daughter up to participate too!



She's on the field at Fenway! And there's the Green Monster!

Doing some warm-ups

 







 Only my girl ... cartwheels at Fenway!


Lucas catching a few fly balls


Taking some batting practice




Warming up in the bullpen 






I might have been a liiiittttle bit excited to be on the field at, did I mention, Fenway Park!



With pitcher Brian Johnson who was there with pitcher Marcus Walden for Q&A session

What a fun experience for everyone, and a fun way for Kayla to spend her birthday!

Sunday, July 28, 2019

Sweet 16 To Remember

Kayla turned 16 on July 15th. Sweet 16! I know, right? How did this happen? It was a magical sweet 16 and one that I hope she'll always remember.

We took a road trip to Massachusetts with stops in Maryland and Connecticut. We had a visit with my dad's side of the family and a birthday celebration for Kayla and my cousin's daughter (who turned 18 two days after Kayla turned 16).


One of the main reasons we made this trip was for Kayla to participate in the National Down Syndrome Society's PLAY Campaign with MLB (more on that in another post). When I saw the date for the event at Fenway Park was on July 15 - Kayla's birthday - and that the Red Sox were in town and playing a game that night, I knew I wanted to make this happen. I've been wanting to take my kids to a game at Fenway Park and this provided a perfect opportunity!

A quick birthday celebration with a few gifts before heading into Boston for the PLAY Campaign in the morning and the game that evening.

Her favorite player is Mookie Betts. When we first told Kayla what we were doing for her birthday she was so excited and said she wanted to meet him; I told her I wasn't going to promise that would happen and knew it was unlikely, but that we were sitting in the right field section so she would at least get to see him play.

In between the PLAY Campaign and the game we explored a little bit of Boston. We took the water taxi across to the North Side and the USS Constitution. On the way back we got on the Green Line at Government Center and the train almost immediately started getting crowded. Joe and Kayla were holding on to a pole at one side by the door and Lucas and I were on the other side. At each stop more and more people kept squeezing on. Kayla was getting anxious and there was a lady who seemed to notice and started talking to her, trying to distract her. She noticed Kayla's Sweet 16 headband and was asking if it was her birthday and then she got everyone on the train to sing Happy Birthday to Kayla. It was pretty cool to have a car full on the MBTA sing to her! This was my view - nothing but armpits, ha!


At the top of every inning Kayla would go down to the wall and wave and try to get Mookie's attention as he was warming up with someone from the bullpen. People in the crowd took notice of her and started cheering and calling his name, trying to help her get his attention. One guy who had a ground foul ball thrown to him from the Toronto right-fielder gave Kayla the ball.

We had seats about 5 rows from the front of this wall, but the people sitting here left early and told Kayla and Lucas they could have their seats. One of the guys managed to finagle a ball from the bullpen (at least we think that's what happened because no foul or fair balls were hit in our section) and he gave it to Kayla on his way out. So now she snagged TWO baseballs! But it didn't stop there.

The usher for our section let me know that at the top of the 9th inning after Mookie finishes his warm up, he comes over to find someone to give the ball to ... so he was saying make sure Kayla would be up waving her arms.

AND IT HAPPENED!! Mookie Betts, her favorite player (and one of mine if I'm being honest!) and all she wanted to do was meet him AND SHE DID! He came over and gave her the ball, shook her hand, and said "Nice to meet you."

It made her night. It made all of ours night. The crowd around us were cheering and clapping and yelling, they were so happy for Kayla.






Here is the video from Joe's phone and from a lady who was behind us in the stands.



We all signed Pesky's Pole after the game. Kayla wrote Mookie's name, and her own.

Lucas wrote "Lucas wants red socks" haha!

He also ended up with a baseball given to him by the usher, and it was scuffed up, so it was used in the game at some point!

Then Kayla signed the bottom part of the pole with "Mookie to (the) best player. I said hi. Kayla" 

What a magical birthday! Going to her first Red Sox game at Fenway Park, seeing a grand slam by Michael Chavis, the Red Sox won 10-8, 4 baseballs between Kayla and Lucas, and shaking Mookie Betts' hand!