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Tuesday, September 13, 2016

10th Annual 31 for 21 Blogging for Down Syndrome

It's the 10th anniversary of "31 for 21" and blogging each day in Oct for Down Syndrome Awareness Month!

Wow! I can't believe it's been 10 years of this annual tradition. If I were more organized I'd host some kind of big party on my blog, but I'm not, so there you go. I'm just the host and this is where you sign up and add your name/blog to the list of participating bloggers.

I feel like most people know the drill by now; however there are babies being born with Down syndrome each year and thus new bloggers participating each year. For those that are wondering what "31 for 21" is and how to participate here is the my annual "what to know" blog post.

- Down syndrome is 3 copies of the 21st chromosome (in medical terms it is Trisomy 21, frequently shortened to T21).
- October is National Down Syndrome Awareness Month
- There are 31 days in Oct
- Blog every day (31) in Oct to raise awareness/acceptance about Down syndrome (T21)
- So ... 31 for 21 Blog Challenge

 A couple of guidelines:
- You don't have to blog about Down syndrome every day; just blog every day about whatever you want
- You should mention, at least once, that you are participating in "31 for 21"
- You don't have to be a parent, or grandparent, of someone with Down syndrome to participate
- Grab the button and post it somewhere on your blog or in a blog post
- Sign Mr Linky so other bloggers can see all the participants
- Meet new bloggers
- Use #31for21 on social media
- Spread the word
- Have fun!

Grab This Button

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Wednesday, August 31, 2016

Questions to Ask Your Kids, Part II, Lucas

Three years ago I did this questionnaire with both Lucas and Kayla and thought it would be fun to ask them the questions again to see how their answers might have changed.

Overall Lucas' responses didn't change much three years later - and for question #9 he gave the same exact answer, word for word, as he did three years ago!

1. What is something your mom always says to you? "I always love you."
2. What makes your mom happy? "Doing stuff the very first time she asks, and giving her love."
3. What makes your mom sad? "Doing stuff on the one millionth time she asks."
4. How does your mom make you laugh? "If she tickles me, if she give me a really good joke."
5. What was your mom like as a child? "I don't know."
6. How old is your mom? "Are you 48? ... or 42? Which one?"
7. How tall is your mom? "I'd say about 5 feet. I'd say 4 feet 12. Haha! Same as 5 feet."
8. What is your mom's favorite thing to do? "Love me."
9. What does your mom do when you're not around? "I don't know cause I'm not around!"
10. If your mom becomes famous what would it be for? "I want to say cooking, but..., I guess I'll have to."
11. What is your mom really good at? "Cooking."
12. What is she not very good at? "Making dresses ... like sewing."
13. What does your mom do for a job? "Parent contacts, something like that? Oh not parent contact, Family Connection!"
14. What is your mom's favorite food? "I don't know. It's a mystery."
15. What makes you proud of your mom? "She's awesome."
16. If your mom was a cartoon character who would she be? "Coaky (something like that) she's from Wild Krats."
17. What do you and your mom do together? "We have fun!"
18. How are you and your mom the same? "We both love each other and we're both awesome."
19. How are you and your mom different? "My mom's a woman and I'm a boy. And she's allowed to cook and drink alcohol and I'm not."
20. How do you know your mom loves you? "I just know."
21. Where is your mom's favorite place to go? "Places that you can be with me."
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Thursday, August 18, 2016

New Beginnings

Last year was a new beginning for Kayla's school year. Not only was she transitioning from elementary to middle school, but we withdrew her from the public school and enrolled her in a welcoming, inclusive private school.

The start of this school year again brought new beginnings - for Lucas this time. Over the summer we made the decision to also withdraw him from the public school and enroll him in a private school that we felt would be a great fit for him.

When I envisioned myself as a parent I know I never thought I would make the decision to have both of my children in a private school. I always thought they would be enrolled at and attend the public school they were zoned for and that would be that.

After Kayla's experience and three years of school for Lucas we realized that public school just didn't seem to be the best fit for either of our kids.

We didn't make the decision about Lucas' school lightly and even up till the day of enrollment I, as I always do, was second guessing the decision. We did involve Lucas in the process making sure he had a say and that his feelings on the subject were heard and validated. I wanted to make sure he understood all the changes that would accompany this switch of schools. He was completely on board with it and had no qualms about starting a completely different school or of leaving his previous school.

He was very excited to start school and so far has been happy with the decision. We are looking forward to a wonderful year of 3rd grade for him!

Kayla was also very excited to get back to school ... she was ready at the beginning of summer! The first week or two of summer break she would ask if she had school the next day and I each time I told her no, it was summer break, she would pout and get upset. She loves school!

We are also looking forward to Kayla continuing the success she had in 6th grade with her 7th grade year!

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Friday, July 15, 2016

A Teenager In The House

Kayla is thirteen today.


I can't wrap my head around the fact that she is a TEENAGER!

How is it possible that I gave birth to a little tiny (6 lbs 13 oz and 18.25 in) human thirteen years ago?

I don't know what to do about this business of having a teenager in the house, but we will figure it out! It also means she is another year closer to becoming an adult and that is something that is happening too quickly!

She was so excited to become a teen today and has been anticipating this for well over a month. She got a room makeover in a new comforter set and curtains. It was time to retire the butterfly theme she's had for oh, about 6 years now! We've upgraded to something more teenish.

Last month she also got a new pair of glasses. Her first pair she did well with and they lasted 3 years. Her lenses needed a slight increase in prescription so she picked out new frames. This was a lesson in restraint for me in stepping back and not influencing her decision (as I did somewhat with my opinion on her first pair of glasses). She picked out her new frames and they are 100% perfect for her.

(Random thought: She still refers to Lucas as, "My Lucas" and I love it.)

I pray we have the strength and guidance to lead her through these next few years as she grows into adulthood ... I hope she finds her voice as a self-advocate, and that we can teach her to be independent, self-confident, and how to find - and make - her way through this world.

Happy birthday to my beautiful thirteen year old Kayla! May you continue to grow and learn and love the world around you and find joy in the every day things.

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Wednesday, June 29, 2016

Thoughts on the Down Syndrome Narrative

Someone left a comment on my previous post - Down Syndrome is a Blessing...or Is It? - that I wanted to reply to, but quickly realized the reply needed its own blog post.

She commented, "I'm sorry that your viewpoints don't align with the general viewpoint of others who are raising children with Down Syndrome. It was kind of sad to read. DownSyndrome hasn't been a blessing (a good thing) in your life. Honestly, calling the expressions made by others about their experiences, DS being a blessing in their lives, "Cliche" was pretty insulting.
These expressions and experiences of all the good things about a DS serve a very important purpose to our community and those around us. 
Enough damage has been done to people who have DS with negative talk about their diagnosis. This is something that I think you are overlooking. And it is unfortunate."

I beg to differ on these points.

My viewpoints don't have to "align with the general viewpoint of others raising children with Down syndrome." I missed the memo that said now that we have raising children with an extra chromosome in common we all have to think and believe in the same things. No. We are still unique individuals with our own thoughts and opinions that we bring to the table. There is no rule book that says we all have to speak from the same script and we can't stray from the party line or have a differing view.

Examples: Parents choose different paths in education - public school, private school, homeschool, special needs school, full inclusion, partial inclusion, self-contained classrooms.

Parents choose different paths in therapy: No therapy, early intervention, school therapy, outside of school therapy, alternative therapy, traditional therapy, medical therapy, TNI, no TNI.

Just because I stated I didn't believe the diagnosis of the medical condition Down syndrome to be a blessing does not equate it to not being a 'good thing' in my life. I stated in the original post that yes, I have been blessed to meet the families I've met along this journey and acknowledge that I wouldn't have met those families if it weren't for Kayla having Down syndrome, but I still don't have to view Down syndrome itself as a blessing. There are plenty of 'good things' I have written about in this little blog of mine.

The expression "Down syndrome is such a blessing" IS a cliche. A cliche is used in article after article after article about Down syndrome. That doesn't make it not true for the people who are using it and I never said parents shouldn't feel that way about it; only that I don't feel that way - and that it is ok not to feel that way! It is used so often that parents who don't feel that way start to wonder if something is wrong with them (and clearly I'm not the only one who feels this way as evidenced by the commenters who agreed with me).

I'm well aware that the "good things" about Down syndrome serve a ... purpose to our community and those around us: That's the Down syndrome narrative. That's the narrative the community presents to society: How great, wonderful, awesome and perfect a Down syndrome diagnosis is.

I understand there is a need to change the narrative about Down syndrome from the negative image presented by the medical establishment. That's one of the reasons I've been blogging for 10 years - to show a glimpse into our lives; to show that our lives, that this, Down syndrome, is ok. We can receive a diagnosis we didn't want, and have a child - a daughter - who was so very wanted, and still pick up the pieces and continue with our lives. This blog was to show (yes, using a cliche and borrowing from that old TV show) ... life goes on. That has always been my advice, my mantra, my story, of raising a child with Down syndrome, "...life goes on." I don't hear of any other medical diagnosis being described as a blessing. My blog/viewpoint was never meant to show the world that Down syndrome is a bed of roses.

Oh, wait. Roses are beautiful, but those thorns sure can be challenging! Maybe Down syndrome is like a bed of roses.

The purpose of my blog was not to tell the world that raising a child with Down syndrome is a ray of sunshine and to never utter a word about the challenges that go along with it, but to share in those challenges, because there are challenges and there is nothing wrong with admitting that.

Parents of typical-developing kids are allowed to vent and write articles about how challenging raising their kids are: the terrible twos, the pre-teen angst, the rebellious teens, but parents raising children with Down syndrome aren't allowed that same grace of being able to say we face challenges, too? We aren't allowed to discuss the hard days, to express our worries about their future? That's all real life.

Because of the negative view that is already out there, "we" (the collective Down syndrome community) go so far on the other end of the spectrum to make Down syndrome perfect and desirable so all those cliches and sentiments get repeated verbatim in most articles. It is as if "we" are trying to convince society that our children's lives are valuable and worthwhile and everything is positive and happy-go-lucky with Down syndrome. We shouldn't have to present this image (although I understand the desire to do so); our children should be thought of as valuable and worthwhile simply because they exist, simply because they are human - we shouldn't have to justify their existence by saying how much of a blessing it is that they have Down syndrome. Down syndrome is a part of the human race, but the blessing and angels sentiments put them as other-worldly, or something more-than their typical siblings/peers. To me it almost seems as if it is dehumanizing them - stripping them of their humanity and putting them on a pedestal to be revered. They are no more and no less than the rest of society. They simply ... are.

Four years ago I wrote this guest post on the Military Special Needs Network for Down Syndrome Awareness Month. I encourage you (the commenter from the last post) to read it and then tell me  'how unfortunate it is that you're overlooking the damage done to people with Down syndrome.' It was a positive article, yet I didn't once have to say that having Down syndrome is a blessing ... but I still feel like it was effective at getting my point across in advocating for people with Down syndrome.

On the contrary, I have never overlooked the damage that has been done by society's negative views of people with Down syndrome. Search for Down syndrome on my blog and read some of the posts from the last 10 years. It's why I continue to host the "31 for 21 Blog Challenge" during the month of October. Here are 2 posts in particular where you may find our views are quite similar: Hope and Normalcy and Hope and Normalcy, Part II.

And as far as placing limitations on my daughter? Well, yeah. I'm not going to tell her she can be and do anything she wants to as long as she works hard and puts her mind to it, because she won't be able to follow in her father's and grandfathers' footsteps by joining the military. There will be limits. I do have realistic expectations for her and I'll encourage her and support her in her dreams and goals; I explain this further in E is for Expectations.

As my husband said to me, in much fewer words: "I wouldn't say Down syndrome is a blessing, but I wouldn't say it's a negative either. I'd just say it was challenging."

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Wednesday, June 22, 2016

Down Syndrome is a Blessing ... Or Is It?

There are a handful of sentiments and cliches that are used over and over in the Down syndrome community that it almost feels as if one is expected to agree with and regurgitate the same information. Once you join the community of parents who have a child with Down syndrome it's easy to find yourself repeating these sayings as if on automatic pilot.

I've blogged before that I just don't identify with most of these cliches such as "since having a child with Down syndrome I've learned to be more patient."( Nope.) "I've become a better person since having my child with Down syndrome." (Again, nope. I don't believe I was such a horrible person before I had my daughter that I was given a child with Down syndrome to become a better person.)

Another sentiment I see oft repeated in articles is "Down syndrome is such a blessing."

This one makes me pause and think. Do I agree with it? Or am I again on the other end of the spectrum with my feelings?

Yes we've been blessed to meet a multitude of families we otherwise wouldn't have met if Kayla didn't have Down syndrome. On the flip side of that I can say we probably would have been blessed to meet a whole group of different parents and families if Kayla didn't have Down syndrome.

But is Down syndrome really a blessing?

I'm not talking about if Kayla is a blessing; she is, but not because she has Down syndrome. I've said it before: she's a blessing simply because she is my child and she exists - as much as Lucas is a blessing to us. For me it has nothing to do with Down syndrome.

Down syndrome is a medical diagnosis and if I separate my child from the diagnosis and just talk about Down syndrome, by itself, would I call it a blessing?

No. It's no more a blessing than Kayla's diagnosis of ADHD, or her diagnosis of Celiac Disease. It's no more a blessing than Lucas' diagnosis of allergies, or his diagnosis of asthma. They are all medical conditions and I wouldn't count any of them as blessings. Why? Why would they be classified as blessings?

That's not to say I'm in denial or haven't accepted my child as she is: I have. She was born, she was diagnosed, it's a part of our lives.

Is Down syndrome a blessing when it brings with it issues like Kayla will probably never be able to drive because she just won't have the quick reaction time, or ability to stay focused, that driving requires?

Is it a blessing that she could be more easily taken advantage of in more ways than one?

Is it a blessing that she can't fully read social cues?

Is it a blessing that concepts such as money and time-management, which come so easily to her brother and other typical same-age peers, do not come as easily to her?

Is it a blessing that telling her she has 15 min to get dressed and be out the door is the same thing as telling her she has 2 hours?

Is it a blessing that she will likely need some kind of assistance to live as independently as possible? And living independently probably will not look like it did when I lived independently.

Is it a blessing that the provisions we have to make for her future are completely different than what we are able to do for Lucas?

Is it a blessing that a law had to be made to allow her to have another avenue of savings because if she has over a certain amount of assets her eligibility for assistance will be reduced?

Is it a blessing that she can't simply own property and a checking account and savings account and do with her money what she would like because it all has to be analyzed and scrutinized to make sure she doesn't maintain more than that magical limit?

Is it a blessing that she can't keep up with her same-age peers academically?

Because I don't view it as a blessing does this mean I wish she she didn't have Down syndrome?

Most days I don't think about Kayla having Celiac disease, but some days I wish she didn't have to deal with a specialized diet.

Most days I don't think about Kayla having ADHD, but some days I wish she didn't have it so she could concentrate better on academics.

Most days I don't think about Lucas having allergies, but some days I wish he didn't have to take Zyrtec and Flonase every night.

Most days I don't think about Lucas having asthma, but some days I wish he didn't have to make an inhaler part of his morning routine.

Most days I don't think about Kayla having Down syndrome, but some days, yeah, some days I wish she didn't have the deficits that come along with a cognitive disability. And there is nothing wrong with admitting that most days I don't give it a thought, but that some days I don't like the medical diagnosis of Down syndrome very much.

It's a diagnosis and I think of it like their other diagnoses. Yes it's quite a bit more involved than allergies, but it's a diagnosis nonetheless and I don't consider it a blessing any more than the other diagnoses.

Down syndrome isn't a blessing, but Kayla, she is a blessing with or without Down syndrome.

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Wednesday, May 25, 2016

Equate: The Board Game

I don't remember in which catalog I came across this game, but I knew it would be a great birthday gift for Lucas - and it has been.

Equate: The Equation Thinking Game is like scrabble but with math problems. It is for ages 8+ but provides a challenge for adults as well! (I also bought the Junior Tile set.)

Lucas and I played this the other day and on his very first move he used all of his tiles (bonus of 40 points for being able to do that) and he came up with this equation. He's heard me say enough times that "anything times 0 is always 0."

I was impressed with his thinking skills of not just a simple multiplication equation, but how to use all of his tiles in the equation. Then Joe came along and mentioned the 'order of operations'  ...

...and pointed out that the answer to that equation isn't actually 0, it's 8.

I wasn't even thinking of that when Lucas played his tile pieces. For this game I didn't think it would matter - that you could just do an equation and read it from left to right (especially because it's for ages 8+ and they haven't learned the order of operations and "Please Excuse My Dear Aunt Sally" yet!)

I pulled out the rule book and Joe was right - you do still have to follow the order of operations; which Lucas didn't appreciate (read: like!) but he got a quick crash course on it.

We explained to him that you multiply first so 6x84=504 and that times 0 = 0 and then you subtract 8-0 to get 8 (not 0).

He desperately wanted to make an equation that would use all his tiles (and he would be the first one of us to do so) so after looking at the problem again I moved 2 of his tiles around and came up with this equation: 8-64x0x0=8.

He scored 90 points off that and I started the game deep in the hole.

He continued to pile on the points with his next equation of 9+3-8-1=3.

You can also have two equations on each side of the equal sign as long (of course) as the equations equal each other. Example: 7+3=6+4

So Lucas took his first equation an added on a +1-1 so now it looked like this: 8-64x0x0=8+1-1.

There are also fraction tiles and you can use 2 fractions next to each other in place of a whole number. So you could have 2+1/2 1/2=3.

Again Lucas added on to that first equation by adding these tiles to the end: division symbol 1/2 1/2 to make the equation read: 8-64x0x0=8+1-1(divided by)1/2 1/2

Needless to say he kicked my butt in that game with a final score of 213-132. I just couldn't recover after his initial 90 points!

I'm so impressed that he attempts to come up with more complex math equations to use more tiles ... and I realize I need to step up my game and show no mercy to this 8 year old! Ha!

Highly recommend this for a fun, challenging game to have on hand for 'family game nights'!
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Tuesday, May 10, 2016

Orkin Summer Scientist Bug Catching Kit Giveaway

Mosquitoes are a not-so-fun indication that summer is on the way (how I enjoy a reprieve from the heat, humidity, and mosquito bites during the winter months!), but despite those little buggers my kids still spend the majority of their free time outside playing ... and getting their legs and arms bitten.

Here is something to make summer a little more fun while they are outside, and a fun giveaway, courtesy of orkin.com, for readers of this blog as well.

The experts at Orkin study the science of mosquitoes (and other pests) to better tailor plans to keep them out of your home. To help your family prepare to "fight the bite", Orkin created the "Buzzer Beater" blog app which features scientific knowledge of mosquitoes.

You can test your knowledge of mosquitoes by taking this quick quiz and you might learn something new - I learned which color lights are less likely to attract mosquitoes.

The blog app also features the videos "How to Deal With Mosquitoes" and "Do Mosquitoes Prefer Adults Over Children?"

Now for the giveaway!

One reader will win an Orkin Summer Scientist Bug Catching Kit

The kit includes:
- DIY bug catcher craft kits
- 2 mesh insect nets
- 2 see-through bug jars
- 2 Magic Color Scratch Critters
- Assortment of glow-in-the-dark plastic critters

My kids are looking forward to adding this kit to their bug collection toys. They had a butterfly net that eventually met its demise after much use, including neighborhood kids using it in an attempt to catch fish/tadpoles from the pond. Lucas has a bug vacuum that will work well with depositing the bugs into the bug jar for observation. He also has a bug box that has been home, for a brief periods, to lizards, snails, and a frog at various times ... so yeah, there are a lot of bug/critter-catching that goes on around here!

To enter to win one of these kits just take the Buzzer Beater quiz and comment with a helpful or surprising fact you learned; or leave a comment with your own mosquito story or tips!

Please note that each household is only eligible to win a kit via blog reviews and giveaways, only one entrant per mailing address per giveaway. If you have won a kit on another blog you will not be eligible to win it again. Winner will be chosen on Monday, May 16.

Learn more about Orkin on their social media sites on Facebook, Twitter, and YouTube.

Disclosure: I will receive a Summer Scientist Bug Catching Kit in exchange for hosting a giveaway on my blog.
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Wednesday, May 04, 2016

The School Talent Show

Kayla and I can be complete opposites in some ways.

Where she is outgoing and social, I am reserved and quiet.
Where she is self-confident, I am self-conscious.
Where she likes to be on stage and perform, I like to be in the back row, unnoticed.

So when her school's talent show was advertised I knew she would want to participate. I knew what song she would want to perform. I knew that she wouldn't care whether or not she could actually sing. I knew all she would care about was being up on that stage.

And I was right on all accounts: she did want to participate and she she did want to sing to "Let it Go." Yes, that song is still big at our house. Karaoke, CD, iPad, YouTube.

When Kayla sings Let It Go she doesn't just sing it, she acts out the whole scene from the movie when Elsa is singing: the hand movements as she's creating her ice castle, the removal of her gloves, her cape, the toss of her crown - Kayla mimics all of that and she's pretty on-cue with when to do those things during the specific parts of the song.

Right before the show the students rehearsed their act one time. During Kayla's rehearsal she used a hand-held mic and then afterwords I suggested she try the clip on mic since she uses both hands while singing the song (although she had no problem in rehearsal switching the mic back and forth I thought it might be easier if she didn't have to worry about the hand mic). She didn't get a chance to practice with the clip-on mic though before it was her turn.

So during her performance when she went to remove the cape she pulled on the string which tightened it up just enough that it didn't slip easily over her head - she's very routine-oriented and knew she was supposed to remove her cape, so in the video you can see her look at me with her palm up as if to say, "Now what am I supposed to do?" She eventually got it off and then it got tangled with her mic and that distraction threw her off. I should have left well enough alone and not said anything about switching mics!

She got back on track though and finished her routine (although I really wanted to ask if she could just start over!)

The audience gave her a standing ovation for getting through her little wardrobe malfunction!

I'm so in awe (and proud!) of her and her self-confidence to perform in front of others!

(At the very beginning she uses ASL to tell me to 'sit!')

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Monday, April 11, 2016

Meeting Some Soccer Legends

Kayla had a busy, fun-filled day of soccer opportunities with the Special Olympics.

The SO participated in a soccer clinic by the TeamFirst Soccer Academy. Four legendary female soccer players came to Mt Pleasant for two days of soccer clinics for various groups.

The clinic was led by Mia Hamm, Kristine Lilly, Tisha Venturini Hoch, and Ange Kelly.

I have to admit that I was excited for the opportunity to meet Mia Hamm in large part because of whom she is married to: Nomar Garciaparra (former All-Star shortstop for the Boston Red Sox). I was really hoping that maybe he would accompany her and I would have the chance to meet him as well; and yes I actually asked her if he came with her! I said, "I'm a Red Sox fan, so I just have to ask, did Nomar come with you?" He didn't, she said he wished he could have, but the baseball season just started and he's a broadcaster with the Dodgers.

I digress ...

Kayla had a fun time doing some soccer drills and a quick scrimmage game. After the clinic I asked her if she wanted to play soccer now. Her response, "Not yet, maybe when I'm thirteen."

Asking Mia Hamm to sign my sister's copy of Hamm's book. My sister, in her younger years (ha!) played soccer. When we went to visit my mom over Spring Break I was looking through the bookshelf in my sister's old room and saw the book and took it home with me to get autographed. Perfect timing!

With Kristine Lilly

With Ange Kelly

With Tisha Venturini Hoch

Later that evening we attended the Charleston Battery soccer game and the SO athletes escorted the starting players out on the field and stood with them for the national anthem.

Waving to all her adoring fans!

"Come on players!"

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