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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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Friday, October 28, 2016

She Is Capable - Presuming Competence

We are a few months into the second school year of Kayla being at a private school and I admit to sometimes still feeling bitter about how the whole transition to middle school IEP meeting went with our local school district. The district's proposed placement was for Kayla to spend the vast majority of her school day in a self-contained classroom. This was a more restrictive placement than she had in elementary school.

I am so thankful that we had the opportunity, and the option, to send her to a private school where she is included for the vast majority of her school day. She doesn't go to Math or ELA with her class, instead she goes to what is comparable to a Resource Room in the public schools. Classes are only 40 min long so she only spends 80 min of her day getting specialized instruction.

The public middle school didn't even want to entertain the idea of Kayla being in a general education Social Studies and Science class even though that was her placement during elementary school. And now not only is she in Social Studies and Science, she is also in Literature, Religion, and Spanish classes.

She's included in a foreign language class! That wouldn't have even been an option for her in the public school (even though it is offered) - the only classes she would have been included in were PE and Band.

Does the fact that she's included in all those general education classes mean she is proficient in those subjects, keeping up with her class, and doing the exact same work as her classmates? Absolutely not....and she didn't have to be for her to be in the public school either.

She does do the work that she is capable of, she participates in class, and she takes tests that are modified to her level - but still on the exact same subject as the rest of the class. She takes a test on the same vocab words in Literature that the class learned all week, she takes a test on key terms, people, and places in Social Studies - her tests are matching or have a word bank, but it's still on the same material.

Do you know what being included means? It means she is challenged and exposed to a wide variety and rich curriculum in general education.

At the middle school IEP meeting the special education teacher pointed out that Kayla would be the lowest level reader in her class ... that she didn't have anyone in her class who was on a reading level "that low".

Nothing magical has changed Kayla's reading level since that meeting - she is still on an early elementary reading level and she struggles with fluency - yet she still participates in Literature class.

Last year her class read the novels Holes, Chasing Vermeer, The Lion The Witch and The Wardrobe, and Things Not Seen. They didn't have to read these on their own; they were read together in class. The teacher would read the chapters and they would have a discussion. It wasn't until they were reading The Lion that Kayla mentioned taking a turn reading it. I asked her teacher what Kayla was talking about. He said the students took turns reading aloud from the book, they aren't required to read if they don't want to, and they can read as much or as little as they want. He said there were times Kayla did read out loud from the book. I pondered how that must have went - the copy we have is fairly tiny print and tracking words like that are hard for her. She doesn't know all of the words in the book but when she was having trouble pronouncing a word the student next to her would help her out. I lamented how that must have gone for the rest of the students ... by the time they finished listening to Kayla read they probably had no idea what she just read (because, fluency). Her teacher reminded me that each student has their own copy of the book and are supposed to all be following along; so they know exactly what is being read.

Not only did/does she participate in the discussion of the books, she took tests on them as well. Were her questions as involved and detailed as her classmates' test? No, but it was still on the subject of the novels and she was still able to answer specific questions.

We also read the books to her at home, and when available, listen to the audio book. Last year she recognized the cover of Chasing Vermeer in the audio books section of the library so we checked it out and listened to it on our trip to MD. This year we've read, and listened to, Maniac MaGee, so when they start reading it in class she'll be familiar with it.

So just because she can't read any of those books on her own doesn't mean she shouldn't be exposed to them or that she can't be interested in them. Because she was familiar with Things Not Seen, when I saw Things That Are (with the same characters) at the library book sale she wanted to get the book and Joe is now reading it to her.

It's all about exposure and opportunities. She would  have missed out on so much of this curriculum had she been in the self-contained classroom all day long.

This year they've read several short stories and teleplays out of their literature book and Kayla has participated too. She's been assigned a character in "The Monsters Are Due on Maple Street" (Rod Serling) and "The Hound of the Baskervilles" (Sir Arthur Conan Doyle) and she follows along and reads her part.

Because of being included she's been Eris, Goddess of Chaos in the 6th grade's Greek Museum presentation.

She's made projects like the Great Pyramids of Giza and a Coat of Arms. Can she do those projects on her own? No, I've had to help her with them ... but then she goes to class and presents her projects and talks about them just like everyone else.

Report cards just came out and she has all A's and B's. Her lowest grade is an 84 and her highest (not counting fine arts) is a 97. Again, this is not to misconstrue and insinuate that she is doing the amount of work her classmates are doing, but she is being graded on the work and tests she is given.

Yet she was deemed incapable of being in a general education classroom.

What about presuming competence and seeing what she could accomplish?

What about giving her a chance?

Instead of being immersed in, and exposed to, the same general education curriculum as her peers, our local district would have had Kayla learning to do laundry.


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Thursday, October 27, 2016

There is Some Resemblance There!

Most of the time when I look at Kayla, or look through pictures of her, I don't see a strong resemblance to myself.

I look through pictures from when I was a baby, or toddler, or young girl and try to see Kayla in those pictures, but still don't usually see anything that makes me think she looks like me.

Yes, she has an extra chromosome which does lead to some characteristics that I don't have, but she also has all those other genes and chromosomes and my DNA so she should resemble me somewhat!

I look at other kids with Down syndrome and their families and siblings and can usually see such a strong resemblance with their other family members...like it is so obvious who they belong to.

I think Lucas looks like my brother and he looks like Joe in this picture of Joe as a young boy.

Even when I look at that old picture of Joe, I don't see a big resemblance with Kayla as I see with Lucas.

Last year Kayla and I took some pictures together ... and finally ... finally! (in this picture anyway) I can see a bit of resemblance. In this picture I can say that she does favor me, even if it's just a little bit!


And maybe a tiny bit in this old picture of me (but I still see mostly Lucas, ha!)





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Wednesday, October 26, 2016

Employing Individuals With Down Syndrome

The National Down Syndrome Society has created an initiative to encourage businesses to hire people with Down syndrome and increase opportunities for individuals with Down syndrome to work in competitive employment settings. This new employment initiative is called #DSWORKSTM.

The resource page includes links for employment/volunteer work, employers, webinars, scholarships for entrepreneurs, and more.

In order to better serve the community with this employment initiative NDSS is asking people with Down syndrome, their parents, or employment specialists/job coaches to fill out this survey.

The first-ever employment conference will be in Arlington, VA next April and geared towards ages 14 and older.

Two recent adults with Down syndrome have made the news for becoming the first teachers with Down syndrome in their respective countries.

Teacher with Down Syndrome Inspires Students in Gaza and Argentina's First Teacher with Down Syndrome.

I'm starting to think about employment or volunteer opportunities with Kayla. Not that there is a big rush right now, but when I was 13 I did have some babysitting jobs and I was also a 'cart pusher' at the base commissary. We collected all the grocery carts from the parking lot ... we would work a few hours on Sat/Sun and I remember the feeling of accomplishment and empowerment it was to have my own money.

She did have that one job experience that she enjoyed helping out the hostess at a local restaurant.

Her first job will probably be at Dairy Queen, if she has her way about it! I would just worry that she would try to eat more of the ice cream than serve it!

Farther in the future I can see Kayla having a job like the two ladies featured in the links above - working with young children. She is really drawn to the younger kids and I think she would do great in a job like that - assisting, or teaching.

I can also see her getting a job at Disney World as one of the characters. She loves dressing up and again, interacting with younger kids. She would be in her element in a job like that; it would probably be her dream job!

Only time will tell what she ends up doing, but I am going to look at possibly having her volunteer at the library next summer for the summer reading program as a place to start being involved and responsible.

If you have older children with Down syndrome what was their first job and/or volunteer experience?


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