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Seth and Ella have a dance

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This will bring a smile. It certainly did for me. Ella has become such a beautiful girl and her brother Seth adores her.

Seth asks, "May I have this dance."

Seth asks, “May I have this dance.”

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Happiest People in the World

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I thought this article did a really good job of highlighting both the great joys as well as the great challenges. I guess the only way that I would modify the “happiest people” is to change it to the most content people. Seth is the least likely to complain about not getting something and hardly ever asks for new things. He really does enjoy the things he has and is very happy to continue to enjoy them. He will, however, ask for ice cream quite often. But, he does in the most charming way! From the article:

The statistics are remarkable.

  • 99% of those surveyed are happy with their lives.
  • 97% answered yes to the question, “Do you like who you are?”
  • 99% agreed with the statement, “Do you love your family?”

Do you know of any group of people, of any economic status, educational level, age, ethnicity, or geographic region, who approach those percentages? Who are these happy people?

People living with Down syndrome.

I especially liked this part because it is real and often ignored as most on the outside default to the “they are just always so happy” stereotype.

The cognitive disabilities associated with Down syndrome, which vary with every child, will mean learning will take longer and can be discouraging for everyone involved. Meltdowns, stubborn refusal to obey, sadness about a circumstance, and fights with siblings will be part of the mix. Add how badly many in our society behave towards people with Down syndrome, and you are guaranteed to have hard days.

Every day we have with our Seth is a blessed day.

This guy in the green is really cute.

This guy in the green is really cute.

Superheroes unite!

Superheroes unite!

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Seth’s 6th Birthday and progress report

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Seth had a great first year of kindergarten. Despite being younger than most of his classmates and having special needs associated with Down syndrome, he was fully included in his class. He was taken out for some more individualized work for about 45 minutes in the morning and 45 minutes in the afternoon. Other than that, he was participating with the rest of his typically developing classmates.

Seth and Moriah

Seth and one of his favorite friends, Moriah, at the school square dance

We were quite anxious about the whole process but the teachers and aides were so helpful in making the transition. We are very thankful, because this has not always been the experience of other families we’ve spoken with at other schools. Seth is repeating kindergarten again this year, and thankfully he has the same teacher as last year. She has given us several encouraging notes talking about how much more Seth is participating and verbalizing in his first few weeks. Maybe all that speech therapy, tutoring and prayer are moving the needle. We are so excited to see all of his progress. We know he’s understanding and communicating much better, but sometimes you love to hear others affirm that progress.

For Seth’s birthday, we hosted a large group of folks from church and some from his school in early May. We are so thankful for Seth and how God has used him in such an awesome way in his first six years. Enjoy the video:

 

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Seth is playing baseball

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We didn’t know what all to expect for Seth when he was born with Down syndrome. I’m not sure I expected him to be able to make good contact with a pitch when he was five years old. Whatever our expectations were, Seth continues to exceed them. In this case, he is participating on a baseball team with some of his buddies from church. You’ll note that he’s not nearly as interested in playing the field as he is in hitting that ball. In this league, the coach will pitch five to ten pitches to the players and if they don’t make contact, the tee will be brought out and the player will hit off the tee. I fully expected the tee would be the standard for Seth, but through three games, he’s made contact with a pitched ball twice out five or six “at bats”. The bigger point is that Seth’s teammates and coaches have fully embraced his participation and have cheered him along like all of the other players. Bottom Line: Seth is playing baseball, and that’s pretty cool!

Watch him in this video:

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3.21 World Down Syndrome Day: Thoughts on How I Celebrate Diversity

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Diversity.

Whether the subject matter is education, the workforce, religion, or societal expectations, it seems our culture is infatuated with the idea of diversity.  For some, it may never truly be understood.  For others, embracing diversity is something that is slowly being learned.  For the children of today, it is the norm.

In my opinion, we are headed in the right direction with diversity.  After all, by embracing diversity we pronounce that no one should be denied opportunities based upon their color, race, age, religion, gender or way of life. However, as much as we’d like to pat ourselves on the back and say “we are a nation that embraces diversity,” we have not yet arrived.

Who wouldn't want to include this guy?!

Who wouldn’t want to include this guy?!

Rather, there is an unspoken qualifier that underlies that statement, and I would argue a more accurate definition of the nation’s understanding of diversity is this:  We are a nation that embraces diversity, to the extent that we deem you a valuable contributor to society.

The time is now for people of all colors, races, age, religions, genders or ways of life to recognize another group in our society that is too often left out when we throw out the word “diversity.”  Simply put, they are the many men, women, boys and girls who are differently-abled and part of the special needs community.  If as employers, educators, neighbors and churches….if as human beings, we are preaching to one another the value of diversity, then we must stand prepared to not only include, but to actively embrace those differently-abled members of the special needs community as our valuable equals.

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Video: Seth Turns Five Years Old!

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Happy birthday to our Seth!!  Time does indeed fly by, as we can hardly believe that we just celebrated his fifth birthday. What a journey these years with him have been.  I say it each time- we wouldn’t trade what we’ve learned these last five years for all the world.

Seth is a treasure I wish the whole world could know.

It’s funny how Seth can be both our easiest and our most difficult child all at once.  Let’s start with easy:  he is the most content child I’ve ever known.  His favorites are easy:  Jesse and Woody (Toy Story) dolls, monkeys, bubbles, outside, Sports Illustrated football, basketball and baseball encyclopedias, Finding Nemo, Mary Poppins (mainly for Burt), watching replays of A&M football games, playing tackle, dancing, macaroni and cheese, pancakes, chocolate and DADDY.  Everything else I think he could give or take, but those are clearly his favorites and truly a win-win every time.  What makes him the most difficult?  Seth is by far the most stubborn of all our kids.  He will refuse to do even the simplest or most necessary of tasks (for example, go to the bathroom and wash your hands) just because he’s made up his mind that he doesn’t want to.  Forget bribery, forget pulling out the list of favorites.  If he’s decided no, we figured out finally that we’d better decide to put on our patient hats.  Seems we don’t have enough of those around here some days.  ;)

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Video: Seth playing with the trains

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Seth is enjoying the wooden train set this year here the FunHouse. It’s hard to turn this guy down when he asks you to play. How can you?

Nothing like two boys playing with trains

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Happy Down Syndrome Awareness Month!

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Happy Down Syndrome Awareness Month!  Have you bought your decorations yet?  Just kidding….isn’t it funny that there’s now and “month” and a “day” to celebrate or bring awareness to most everything these days?  But this momma can’t think of anything more noteworthy than to bring awareness (and maybe even dispel some fears) about Down syndrome!

So, a little more than four-and-a-half years ago, I would have found myself in the shoes of someone who knew nothing about Down syndrome, other than the fact that it is some sort of “condition” that a “friend-of-a-friend” had a child with, etc.  Under-informed, hesitant, scared and generally uneducated were some phrases that you might use to describe my perspective on DS, though I’d probably tell you very quickly that I knew a lot about it because I have (at one time or another) been in close proximity (or even the same room) as someone with Down syndrome.

I never thought Seth would climb this thing! I was so wrong.

So, here’s my list of preconceived notions about someone with Down syndrome that qualified me to talk about it and feel sorry for people with it……and the truths that I now know about the beauty of the extra chromosome.  WOW…wish I had read this years ago!  Here goes:

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Haircuts!!!!

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Ooooooooooh Haircuts!

Now, I don’t know many little boys that enjoy/sit still for/tolerate haircuts.  And if you have one, I don’t want to know about it.  But, I’m going to put Seth in the category of “kids that hate haircuts more than anything.”  Truly. Haircuts are awful….well, so are trips to the ENT, or any doctor for that matter.  Now, I’m no super-mom-pediatrician like Noah’s mommy and my sweet friend Abbie, so I can’t just grab an otoscope and check Seth’s tube placement at a moment’s notice.  However, I’ve watched some videos online and personally observed several little boys’ haircuts, and I’ve decided that to simplify our lives a little, I can start giving Seth haircuts.

Texture issues: I think Seth hates the clippers more than anything. But there can’t be anything quicker and more fool-proof than a guard and a few targeted swipes up the neckline with a good pair of clippers. So, that’s where I start! After plugging in the clippers, I let Seth touch them while they are turned off, then I turn them on and he goes into a tailspin. I’m hoping with repetition, this will become less traumatic! After we talk and talk and talk and talk about what mommy is going to do, and he continues to scream and peel away from me, I sit him on the floor, wrap an arm around him, lean back and get to clipping! Mind you, we are on the living room floor, watching Imagination Movers, and I’m crossing my toes that it turns out even (enough)! Then, I move to a bigger guard to blend toward the top and after that’s done, we CHEER because mom has finished with the clippers. Seth likes to say, “Bye bye clippers!” I try my best a scissor cutting the top (a small trim) while he is dodging, dipping and diving from my hands and the scissors. I would imagine a trained professional could cut a cooperative little guy’s hair in 5 minutes or less, but Seth and I take our time and I’d say we’re done in about 20 minutes. Let’s just say his hair looks better wet than dry! But all in all, we still think he’s one good lookin’ dude!

Good job Seth! We did it!

 

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Video: Emily Reads for Seth

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Seth has really been making progress with his speech. He’s been going to speech therapy once a week since March and is now back in his half day pre-school program since school started back up.

The kids are loving school and so is Mom

We are working really hard on shapes, colors, and ABCs. Regular readers remember my feeble attempt to make a video for Seth singing the ABCs. Emily stepped up the game big time this week by making a longer, more comprehensive, video where she reads several books. We figured someone else might benefit from this other than Seth so we are posting the video Emily made for Seth. We try to keep learning fun here at the FunHouse.

I also created a video in the past for Ella where I read “Where the Wild Things Are” for her viewing pleasure.

 

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