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Thursday, November 09, 2017

Chess Accomplishments

As I mentioned in this post, Lucas is really enjoying the game of chess and becoming quite a decent player (if I do say so myself!).

A few weeks ago the library chess club had a small tournament among their members and he came in third.

A few weeks after that he participated in the Charleston Fall 2017 Chess Scholastic tournament that was an official US Chess event. There were 21 players in his ratings bracket.

This kid took 2nd place! So proud of him!

There is another tournament this weekend that I wish he could participate in, but he has a soccer game (and he missed a game the weekend he participated in the chess tournament); the joys - or conflicts - of having interests that overlap!

Tuesday, October 31, 2017

Monday, October 30, 2017

Human Trisome Project

The Human Trisome Project is a ground-breaking research initiative into Down syndrome and researching the medical complexities that can accompany having an extra 21st chromosome.

I first heard about the vision for this project at a Global Down Syndrome Foundation medical round table discussion at the NDSC Convention a couple years ago - exciting to see it's up and running now!

The mission of this project is to "...significantly advance our understanding of several major medical conditions and human biology in general, enabling the developmental of novel diagnostic and therapeutic tools to serve not only individuals with Down syndrome, but also the billions worldwide who experience conditions affected by trisomy 21."

This research will be the larges and most comprehensive of its kind helping to answer the questions of why people with Down syndrome are predisposed to diseases like Alzheimer but seem to be protected from some kinds of cancer.

They are currently enrolling anyone between the ages of 6 months to 89 years.

They are enrolling:
- people with Down syndrome
- people who have a family member with Down syndrome
- healthy people who don't have Down syndrome

Basically anybody and everybody can participate in this important research project.

Click here for more information and click here to get involved.

Sunday, October 29, 2017

If I Could Go Back

Remember the online documentary about 5 roommates (4 with Down syndrome and 1 with Williams syndrome) in England called The Specials

Their website was recently relaunched where Seasons 1 and 2 are available to watch and they have a trailer to their new film they are releasing called "If I Could Go Back..."

It's a film geared towards new parents and made in corroboration with parents who have children with Down syndrome from around the globe, to include UK, USA, France, Nepal, Australia, Sweden, Spain. The parents are reflecting on their experiences and passing on some insight to new parents. If I could go back, what would I tell myself? I wrote myself a letter about that!

You can check out their Facebook page and YouTube channel, too.

Saturday, October 28, 2017

Missing Out On Beautiful

Missing Out On Beautiful is a collection of seven short essays about raising a child with Down syndrome written by Amy Julia Becker (author, including the book The Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny).

Amy Julia is offering this collection of essays for free. The book downloads directly to your desktop for reading.

The last essay is actually an interview with her daughter, Penny, who is 11 years old and has Down syndrome.

Friday, October 27, 2017

Deja Vu at the Iron Mountain Iron Mine

Last month when we went to Wisconsin I thought it would be neat if I could take the kids to Iron Mountain Iron Mine. I went there when I was 13 and my brother was almost 11. I thought it would be fun to take Kayla and Lucas to a place I had been when my brother and I were around their ages.

My sister hadn't been before, so she got to experience it too.

Back in the day ... with my mom, uncle, and brother.

Now ... with Lucas, Kayla, and my sister

My brother and me

Lucas and Kayla

Back in the day 

And now my own kids posing with the big tire - who would have thought?

Thursday, October 26, 2017

Sweet Caroline and the Red Sox

It goes without saying that I'm a Red Sox fan. Unfortunately for me, the local minor league team here in Charleston (the RiverDogs) are a Yankee affiliate. We have gone to several games though and the kids enjoy it. A few of those games the RiverDogs have played the Greenville Drive. The Drive happen to be a minor league affiliate of the Red Sox. So it's cool to go to a Boston/New York rivalry game - minor league style.

Greenville is only 3 hrs away so this summer we went to see a game in their stadium - which is built after Fenway Park - Pesky's Pole and the Green Monster to boot!

A tradition at Fenway Park is the singing of the (unofficially official) anthem of the Red Sox: Sweet Caroline by Neil Diamond. It's played at every game. They do the same at the Greenville Drive games, too. It's not quite like being at Fenway Park, but for living in SC it's as close as I'll get.

Kayla got into the song - and as you can see by the video - she makes a friend wherever she goes!

Wednesday, October 25, 2017

Medical Research in Down Syndrome

Down syndrome continues to be the most common genetic disorder and the least funded. There is so much to learn about the connections to the 21st chromosome and research is so important.

It's important not just to the individuals with Down syndrome and their families - but it is important in the general population as well. There is a huge connection with Down syndrome and Alzheimer and potential cures for Alzheimer can help the general population. There is also interest in researching in why people with Down syndrome are less likely to get certain cancers - like breast cancer - or more likely to be diagnosed with leukemia, but have a higher rate of survival.

Frank Stephens, a self-advocate, testified on Capital Hill regarding the importance of funding for Down syndrome research. It's important for his voice to be heard.

As he states, people with Down syndrome are "...a medical gift to society, a blueprint for research into Alzheimer, cancer, and immune system disorders."

You can also watch the testimony of Michelle Sie Whitten, Co-Founder, President, and CEO of the Global Down Syndrome Foundation.

What can you do as families? Have you registered with DS-Connect: The Down Syndrome Registry? You can connect with researchers and health providers and possibly participate in certain clinical studies.

Tuesday, October 24, 2017

I Love the 80s

We were fortunate to spend another fun family weekend at Camp Victory Junction last weekend.

The theme was "I love the 80s!" How fun for me since I grew up in the 80s :) We were originally on a wait list to attend. A week before camp we found out another family couldn't attend so I didn't have much time to figure out our 80s outfits, but I think we managed ok with what we had.

Joe and I pegged our jeans and I scrunched up some big socks. An off-the-shoulder shirt with a big black belt and a side ponytail completed my look. It was easy to throw together Kayla's outfit- bright colors, denim jacket, big belt. Lucas was a little harder, but athletic/track pants seemed to be big for boys and he wore a shirt with ADIDAS since that was a popular brand.

I was disappointed with my hair though and that I no longer have the type of hair (ie no bangs!) to curl and tease and make big - haha!

We had a nice weekend away and I enjoyed not having to figure out meals for a couple of days and also not having to worry about what Kayla can eat. They accommodate for dietary needs.

Monday, October 23, 2017

Parenting and Perceptions (Repost)

I originally posted this nine years ago. I occasionally still feel this way; so this is a good reminder to myself.

As a new mom one thing I struggled with (and sometimes still do) is Kayla's behavior in public and the perception other people might have.

It's not necessarily what I would consider really bad behavior either; she doesn't throw fits/temper tantrums, beg for toys or candy, cries or whines...but she doesn't listen. She takes off down random aisles going where she wants to go. She doesn't have a care in the world or even cares if we're following her. She doesn't care if she's not staying with us. How frustrating is it to call your child back "stop!" "turn around!" "come back here!" and they completely ignore you? Or they think it's a game and see how fast they can get around the corner before you catch up to them.

Kayla was never one to just stand in one place while I browse the shelves for whatever I'm looking for. It would make me a little sad to see other kids just walking nicely and calmly holding their parents' hands, or just standing by their side; my kid would have to be in the cart or else she would take off. (Over the last year she has become better at walking with us, but still has her moments of taking off.)

Same thing with restaurants. It stresses me out to go out to eat with Kayla. We rarely eat out as it is, but now I try to avoid it if possible. She won't stay seated. Up, down, up, down. Fidgety, trying to climb under the table, over the table. I bring things to keep her occupied but it just doesn't work...everything else is so much more entertaining. I hate saying over and over "Kayla sit down!" "Just sit still!" blah blah blah...so we just don't eat out.

I know all parents want and expect their kids to behave - especially in public. No one wants to be the parent who has the kid acting up and everyone else is discreetly trying not to stare at you.

But kids will be kids. They have short attention spans, they're curious, it's hard for them to do grown-up things, shopping can be boring for them, they have moods, they're not always well-behaved.

So while yes, I do expect my child to listen when I'm calling her, or telling her to stop, sometimes I think I expect too much from her. I think I've put expectations on her to be good all the time and when she doesn't I get frustrated. And no child can be "good" all the time. It's not reasonable to expect perfect behavior (although it would be nice!)

I think I've put some unreasonable expectations on her because she has Down syndrome. Because if she's running away from me and not listening when I'm telling her to stop and I end up chasing her down...then people might see that and think "oh she's got her hands full with her daughter who has Down syndrome." Because if we're in a restaurant and she's not sitting still (and I mean standing up on the chair, sitting down, standing up, getting down) someone might look at us and think "thank goodness I don't have a child with Down syndrome; look what the parents have to deal with."

I expect her to have this oh-so-perfect behavior because what if our family is the only interaction some other family has with Down syndrome and think negatively because of it? Whereas if she was "good" all the time then someone might observe and think "oh having a child with Down syndrome isn't so bad."

Of course I have no idea what anyone else is thinking. These are only my thoughts on what they might be thinking. But I do worry about what other people's perceptions are. I worry if they're going to judge a whole segment of society - people with Down syndrome - based on what they see of my daughter.

I know this isn't fair to Kayla at all. It's not fair for me to expect her to be "on" all the time just so she can be a "positive face for the Down syndrome community." She's not the poster child for Down syndrome. And if I don't want people to perceive her "negative" behavior as an attribute of Down syndrome then I need to stop doing it myself..because sometimes I do wonder "would she be acting like this if she didn't have Down syndrome? Would she be this active and impulsive?" And if so would I care as much? Would I worry so much about what other people thought? Would I stress so much when we go out in public? I need to see her personality for what it is - a highly active and curious child (which totally clashes with my more mellow style!)

I do know that her "behavior personality" isn't specific to Down syndrome. I know a lot of typical kids act the same way and some of it has to do with age too. But when you have a disability it feels like everyone is judging you/your child on that instead of it just being "their age."

I don't even know what exactly it is I'm trying to say here! Just that sometimes parenting really is hard; trying to figure it all out - how to raise these little people that depend on you for everything. Trying to do the right thing by them...sometimes failing, sometimes succeeding...but learning through it all.