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Monday, June 05, 2017

Better Late Than Never

Last Memorial Day, not the one that just passed, but the one in 2016, Kayla had a dance recital. That's how behind this post is - a whole year!

She did great with her recital the previous year - Coppeli - and I couldn't wait to see her shine again, and she didn't disappoint.

I didn't take any pictures of her dancing like I did before (it's easier to enjoy and actually watch her dance without concentrating on getting pictures). I did take a few before/after photos though - and her costume was so beautiful on her last year!



After her recital I posted this on Facebook:

"Proud mom tonight! Kayla may not be the most graceful dancer, she may be a step behind, or a beat ahead ... but she gives her all and she dances with joy. She dances with so much joy it radiates off her face.

At intermission someone came up to us to tell Kayla how well she did and that she told her husband that she just loves watching her dance because she smiles no matter what. The final dance production was a father-daughter dance and she had the best time. After the dance a lady came over to me and said that Kayla was her favorite of all the dancers during the father-daughter dance and it was such a joy to watch her dance.

Another lady came up to Kayla and asked if she could shake her hand - and said how great it was to watch her dance with such a big smile on her face the whole time.

On the way out a couple other people topped to say how precious she was dancing with her dad and how much they enjoyed watcher her dance because of how much fun she was having."


I had to keep my emotions (tears) in check because I know Kayla wasn't the best dancer - with her form or mechanics - but that's not what they noticed. They noticed her effort, her joy, and how much fun she was having just being up on stage dancing.



My mother-in-law took a couple of videos, but I don't know how to post them directly on my blog. She uploaded them directly to FB so I don't have a youtube link or anything to imbed on my blog and don't know how to get a video off FB. They videos are public, but I imagine you'd still need a FB account to view them.

Anyway, here they are:

First video of father-daughter dance

Second video of father-daughter dance

We took a break from dance classes this year, but yesterday we were reading one of the American Girl stories and the character takes ballet and Kayla said, "I like ballet best." I asked her if she missed going to ballet and wanted to take classes again. She said yes, but made it clear it was to happen AFTER camp - nothing stands in the way of her summer sleep-away camp!

Guess we will get back in to the dance routine after summer!

Wednesday, April 12, 2017

He "Got Over It"

Earlier this year Lucas told Joe that he wanted to run in the Cooper River Bridge Run - a 10K race that Joe ran a few years ago. So Joe registered them both and they trained when they were able.

A tag line of this run is "Get Over It" - ie getting over this bridge.

The only other race Lucas has participated in was a couple years ago when a friend organized a 3.21 Run/Walk for World Down Syndrome Day. I was surprised that day when he ran the whole thing as we anticipated he would run for a small part of it and then walk the rest of the way - but he hung with the race organizer and ran the whole distance.

I wasn't sure how his first 10K was going to go, but he was determined to do this race.

I needn't have worried.

Lucas conquered his first 10K. He finished 3rd in his age group of 82. Out of 32,623 participants, he finished 2980 overall. His time was 52:34 with a pace of 8:27/a mile.

He also finished 1:05 ahead of his dad. Bragging rights, right there!

Right after the race Lucas said he wanted to do it again next year.

He's following in Joe's running footsteps, not just by running races, but also running and fundraising as a representative for LuMind Down Syndrome Research. He raised almost $700 for LuMind. So proud of this kid!

Finding his and Joe's names at the expo

Ready to run

Finished!

Red and tired faces

The 3rd place finish medal he received

His exciting day didn't end with the race. That afternoon he scored a goal in his soccer game; which his team won and finished their season undefeated.

His day ended at the playground ... where he found $5.

A great day indeed!
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Friday, March 31, 2017

She's Thirteen, Not Three

This past Christmas I was at a crossroads with Santa. I also felt myself in a conundrum with wanting Lucas to believe for another year, but wanting to tell Kayla the truth. Lucas was highly skeptical so I knew it wouldn't last much longer. I blogged about him coming to terms with it, and wanted to include what I was going through with Kayla, but that blog post was already long enough.

Kayla is thirteen and in the 7th grade and hasn't questioned the story of Santa. She took the story at face value - Santa brings gifts and that was that. I don't remember when I found out the truth, or how old I was. I'm sure I didn't still believe when I was thirteen and I doubt Kayla's classmates still believe.

So one day, several weeks before Christmas, Kayla was talking about Santa and I just casually said, "Kayla, Santa's not real, ok?"

Kayla, "Santa is real."

Me, "Well you know all the Santas that you see at parties or parades? Those aren't real Santas, they are just people dressed up in costumes."
She replied back, "He's real at Christmas you know." I had to laugh at that.

The next time we talked about it she said, "Santa's fake" and I confirmed, yes, Santa is fake. He's not real. I wasn't sure if she really understood what I was saying or if she was only referring to the Santa at the Christmas parties.

Then there was the time Lucas was asking about Santa, again, and Kayla yelled out, "Santa's fake! Right mom?" oops!

Up until Christmas she seemed to just accept the "Santa's fake" line, but on Christmas Eve and Christmas Day she was back to insisting that Santa was real.

There is a certain kind of magical element to Christmas when you have young kids who believe in Santa, and it's fun to see their surprise and wonderment at receiving gifts they asked Santa for, but as kids grow up that belief eventually fades away and I'm not interested in keeping Kayla in a 'younger' mindset.

I'm not going to continue that ruse with Kayla just because she has Down syndrome.

I want Kayla to be taken seriously by her peers, potential employers, and by her community. If she is 25 years old and still believes in Santa, will they take her seriously? Will they presume her competent? Or will they think she is less capable? Will they continue to treat her younger than she is? I am not going to play along, or encourage my adult child, to believe in Santa.

I'm not saying there is a right or wrong way on how to handle this, only this is how I feel and plan to parent my child.

People already have a tendency to treat her younger than she is.

How many parents have a typical 13 year old daughter who, when leaving a medical office, are offered a sticker?

How many parents have a typical 13 year old daughter who, when left in the exam room the nurse, or assistant, asks, "Would she like to watch Peppa Pig?"

No, she is not going to watch Peppa Pig - she's thirteen, not three. I realize she might not look like she's thirteen, but she's obviously not a toddler.

Yes plenty of older children/younger teens watch cartoons, but there is a difference between cartoons and preschool programming.

Yes I had a sticker book, two actually, when I was a kid. I still had those books when I was thirteen. I don't think I was still collecting/trading stickers at that age though - or if I was it was not on a regular basis and it wasn't with stickers from doctor's offices (which are, usually, more of the preschool character variety.)

Kayla is going to believe what she believes and I can't change it, or force her to not believe in Santa, but I won't encourage it and I won't continue to tell her Santa is real.

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Tuesday, March 21, 2017

Not Special Needs and His First 10K

Today is World Down Syndrome Day - March 21st because people with Down syndrome have 3 copies of their 21st chromosome.

The past few years the CoorDown organization from Italy has produced some great PSAs for WDSD, and the one for this year doesn't disappoint.

It's about describing people with disabilities as having "special needs" - and although I have, and do, use that description, I haven't always felt comfortable with it. There's a nagging feeling in the back of my head when I say "special needs" ... which I blogged about 5 years ago in "That Word Special."

I was glad to see CoorDown put a video out that mirrors my thoughts: Not Special Needs, Human Needs. Kayla doesn't have special needs - she has human needs.



And another note on World Down Syndrome Day - as in years past, all donations made today to LuMind RDS will be matched 3:1. How great is that? A $25 donation will be matched with $75 turning that donation into $100.

In more news - Lucas is following in Joe's running shoes. He's running his first 10K in the Cooper River Bridge Run on April 1st. And just like Joe, Lucas is representing LuMind and raising money for Down syndrome research. If you're able to support him in reaching his goal he would really appreciate it! Any donation made today through his Crowdrise page will also be matched 3:1 as the donation goes to LuMind. Thanks for any support!
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Thursday, February 23, 2017

Last Year for Single-Digit Birthdays

Today marks the last year that anyone in this household is celebrating their birthday with a single-digit number.


Lucas is nine. I can't believe that next year he will already be in the double digits. I can't believe that he's nine already. Kayla was just nine!

He still enjoys Legos, reading, making things out of cardboard boxes, and soccer. A few other hobbies he's picked up are chess, Minecraft, and metal-detecting.

He still has an appetite for learning and such a kind heart. If a classmate isn't there on the day they spend their 'school bucks' at the 'school store' he buys something for them with his school bucks. We still have a jar on our counter that we put lose change/money we find in and he donates to a rotating list of charities.

He's had a wide variety of career ideas: race car driver, teacher, chef, restaurant owner, environmentalist, to now expressing an interest in being an inventor of products that will help people. He used to be adamant that he wanted to live in the jungle, now he's decided he just wants to visit.

I just can't believe he's growing up so fast. I was giving him some bedtime cuddles a few nights ago and mentioned that in a couple of years he won't want those bedtime cuddles. He insisted he would. I told him that when he's a teenager at 13 he won't want his mom giving him bedtime cuddles! He thinks he will.

He has a sense of humor, too, and I wish I could remember to write down all the funny things he says.

One of the commercials that aired during the Super Bowl was for an anti-aging cream and it started off with, "Maybe it's DNA ... Maybe it's Olay..." and Lucas says, "Maybe it's plastic surgery." It's never a dull moment!

Happy 9th Birthday, Lucas! May you continue to be a kind, caring, inquisitive, funny, creative individual who wants to save the earth!

I'll always love you more! :)


Friday, January 06, 2017

Santa Has Left the Building

Christmas 2016 turned out to be the last year that Santa was alive and well in this household ... although that was fading fast and had been for the past couple of years. He made a last-ditch effort, but it didn't work. The gig is up. So long, Santa.

Lucas has been questioning the realness of Santa for a few years, but I've somehow been able to avoid giving him a direct answer.

He knew, early on, there was no Easter Bunny. We didn't hype it up that much anyway, so when he asked if the Easter Bunny was real I asked him, "What do you think? Do you think there is a giant Easter Bunny that hops around on Easter delivering baskets to kids all over?" He laughed and said, "No, I don't think there is an Easter Bunny who can do that."

Somehow that didn't quite transfer over to a non-belief of one jolly old man in a red suit flying around on a sleigh with reindeer delivering gifts to kids all over; but I think it probably planted the seed.

Next up on the list was the tooth fairy. We went round and round on discussions about that - but he still had lots of teeth left to lose and I wasn't ready to give up the fun of finding a dollar under your pillow from the tooth fairy - so I held out on a straight forward answer to that one, too. Eventually he wore me down and I came out to him as the tooth fairy. But not before he wrapped his tooth up in a tissue with a heavy bolt and concocted some kind of device where it was all tied up around his finger so he would feel the pull and wake up and catch the tooth fairy - or me - in the act. It didn't work as I'm a parent and was able to stealthily untie and unwind the trap and switch out the tooth for the money.

We never did the Elf on a Shelf, so I didn't have to worry about that. Although in Kindergarten he did ask why we didn't have one that visited our house.

He started questioning about Santa a few years ago when we were at 3 events in one day where Santa was present. He questioned the subtle differences in the costume - all black belt vs black and gold belt etc. We told him that the Santas he sees out and about at events and parties aren't the 'real' Santa, but helpers. He bought that, but it was a little sad that there wouldn't be any more child-like wonder in his eyes at sitting on Santa's lap.

He kept coming up with ideas on how he was going to figure out if Santa was real ...staying up all night long, (I remember my own determination in attempting to do that one year as I sat watching out my bedroom window until I eventually fell asleep), not telling us everything that was on the list he wrote to Santa, noticing the wrapping paper in the closet was the same as the one Santa used last year (oops!).

Last year after he read the note Santa left thanking them for the cookies he ran upstairs with the note to compare it to a note I had written him. He came back downstairs saying, "Ok, but I'm still not all the way convinced."

This year someone had given him reindeer food and he had some idea about how he was going to sprinkle it on the lawn and be able to tell if they had eaten any of it. He also said he wasn't sure he wanted to leave any cookies out because if there wasn't a Santa that meant "you and dad get to eat all the cookies!"

Several times leading up to Christmas he wanted to know if Santa was real, but I wanted one more Christmas to play along ... and I think as much as he wanted to know, he also wanted to play along and believe for one more year, too. I've read him the "Yes, Virginia, There Is A Santa Claus" letter (and we have the animated DVD of this), I've told him about the spirit of Christmas and the joy of giving etc ... but I know that wasn't what he was asking about. He wanted to know specifically about the myth of the man flying around in a sleigh with reindeer.

I said, "If you believe you'll receive." He said, "I've heard that saying before."

So why don't you believe? Lucas, "I don't want to believe in something if it's not true."

I asked him why he couldn't just believe on faith, why question it? His answer blew me away. He thinks too much!

"I'm afraid if I believe there is a Santa, and there really isn't a Santa, when I'm adult and have kids, my kids won't get anything."

Me, "What in the world are you talking about?"

Him, "When I'm an adult what if I believe there is a Santa, but there really isn't, but I believe there is, but because there isn't my kids won't get any gifts?"

Me, "I don't fully understand - your gifts don't all come from Santa, they come from your parents, your sister, your grandparents."

Him, "Yeah, but what if I believe there is a Santa so I don't go buy any gifts that are "from Santa" for my kids, because I think Santa is real, but what if he's not? Then my kids won't get any gifts that are 'from Santa' because I didn't go buy the gifts."

Oh. My. Word. I can't keep up with the pace of his analytical brain. Seriously, what 8 year old thinks about their adult self as a father and worried about not keeping up the ruse of Santa for their own kids because they still believe in Santa?!

 I think he wanted to know, but I also think this was one of those times where you shouldn't ask the question if you don't want the answer. I didn't want to spoil it right before Christmas. He also kept saying he had some ideas on how he was going to find out if Santa was real, and I didn't want to interfere with his plans.

So Christmas morning came and after the excitement died down Lucas said he didn't think Santa was real. His reasoning?

- The gifts that were from "Santa" have "Made in China" on them
- The metal detector from "Santa" is the exact same one he had saved on the computer

I still laughed it off and wouldn't cop to it. But a little while later as I was sitting next to him as he played with kinetic sand, he asked, in a quiet and serious voice, "So is Santa real?"

I grabbed my laptop and pulled up a website on St Nicholas and read him his story and how that led to the various Santa figures throughout the world. And I finally said those words, "So no, there really isn't one person who flies around the world on a sleigh delivering gifts."

I asked him how he felt, and if he was ok with there not really being a Santa.

"Yeah, because I thought there was something fishy about it anyway."
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Friday, December 02, 2016

They Were Taking Advantage of Her

Kayla and Lucas were playing outside last weekend when Kayla came in the house to get a snack. Nothing seemed to be amiss with her. A few seconds later Lucas came in the house. Something was amiss with him.

His face was red, he looked visibly upset, and he looked like he was losing his battle to hold back his tears. He didn't say anything, instead grabbing his cup and getting some water. After he chugged down his water I asked him what was wrong.

I tousled his hair and pulled him to me so I could wrap my arms around him in the hopes of giving him some comfort for whatever had him so upset.
The pent up frustration and floodgates opened and he managed, in between big gulping sobs to catch his breath, to tell me, "We were playing kickball and they were taking advantage of Kayla!"

Kayla was still in the kitchen during this time, but never said anything, didn't seem bothered by it - in fact she ran right back outside to play.

The story I was able to get from Lucas is they were playing kickball with 3 kids on each side. Kayla was on his team. When she reached first base the 3 kids from the other team kept telling her to run for second base. Lucas felt like they were telling her to run because they knew they would get her out (he said they had done this once already).

He was yelling at her not to run and also yelling at the other kids to stop telling her to run.

But they kept encouraging her to run.

He got upset and that's when he came in the house (and he didn't go back out to play with them).

I'm sure some of his frustration was with Kayla - being on his team of course he wouldn't want her to get an unnecessary out, and I imagine he was frustrated that she wasn't listening to him. However, he has never become so upset or frustrated with her for not doing something he's asked her to do that he ends up crying that deep kind of cry where your breath is hitching after every word.

He also described it as the kids "taking advantage" of Kayla. He realized whythey were telling her to run. He recognized it as taking advantage of his sister - those were his own words.

How did Kayla view all this? I only know from when she came in the house she didn't seem bothered by it - she seemed oblivious to what Lucas was even talking about.

I didn't witness it, but I know Kayla doesn't care so much about strategy in playing a game - she's just out there to have fun. If they were telling her to run, she was probably laughing right along with them (not realizing that they were probably laughing at, and not with, her. She doesn't think of people doing things with ulterior motives. She probably looked at it as a challenge - "Ok, I'll run!" and amidst all the yelling and whatnot she probably wasn't even focused on Lucas yelling at her. Too much sensory overload is what I imagine. So Kayla wasn't aware that it wasn't with the best of intentions that they were telling her to run.

Is having a few neighborhood kids encouraging Kayla to run, when she shouldn't be, during a game of kickball so they could get her out that bad? Obviously there are worse ways kids could treat her. But Lucas has a sensitive soul. This is the first time he's witnessed something like that happening as it pertains to Kayla and knowing they were doing that because she has a disability.

My heart was hurting seeing how much he was hurting by this; I had to keep my own tears in check. I wish at 8 years old he didn't even have to be aware of what it means to "take advantage" of someone.

I was heartened that he stood up and told them to stop, and when they wouldn't stop he left the game. I hope as he grows older he'll always be courageous and stick to his convictions and not be afraid to speak up if someone is being treated badly.

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Monday, October 31, 2016

Cleopatra and the Fireman

Oct 31 - we made it! Congrats on another year of blogging for Down Syndrome Awareness Month.

Once Halloween is over it just feels like the rest of the year flies by! Before you know it we're eating turkey and opening presents ... where did the year go?!

Happy Halloween from my trick-or-treaters: Cleopatra and Fireman Lucas






Despite being a 49er fan Joe did a great job on my Patriots pumpkin ;)


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Sunday, October 30, 2016

Tank Tops at the Pumpkin Patch

Nothing like waiting until the last day, and probably one of the hottest, to get to the pumpkin patch and corn maze this "fall" season.

We've had a little bit of a heat wave this weekend, as has most of the country it seems! So we found ourselves, the day before Halloween, at the pumpkin patch in shorts and tank tops.

Halloween is supposed to be just as warm, but at least in the evening after the sun goes down it will be a bit cooler out!


Yes, her shirt does say "Hello Summer"












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Saturday, October 29, 2016

Survey on Opinions on Medical Research for Down Syndrome

Researchers at the Mayo Clinic are conducting a survey to learn about what parents and individuals with Down syndrome think about medical research advancements and priorities for Down syndrome.

The information gathered in this study could possibly be used to advocate for the needs of the Down syndrome community in further medical research.

Research into Down syndrome can affect more than just the Down syndrome population - important research is being done on Down syndrome and Alzheimer's which could have implications on the general population of Alzheimer's patients. There are also studies on Down syndrome and cancer; while individuals with Down syndrome have a higher incidence of getting leukemia they also have a higher survival rate - and they have a lower incidence of getting some other types of cancer.

For more information on the latest in the field of research and Down syndrome see LuMind and GDSF websites.

To take the Opinions on Medical Research survey if you are a parent of a child with Down syndrome age 12 and over click here; if you are a person with Down syndrome age 12 and over click here.

(The survey asks for opinions on medical interventions and medicines that do not exist and have not yet been developed.)

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