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Get frustrated or make it a teaching moment

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Sometimes when Seth does something goofy like making a mess of packing materials, you have a choice to either get frustrated or use it as a teaching moment.

Or, you can do like I did today, and do both.

Up close and personal

Standing up

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Hope for haircuts

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Many of you, whether you have a child with Down syndrome or not, wonder if your child will overcome the terror of the barber chair. There is hope. Seth used to be so resistant that the blood vessels on his face would burst. We would walk away beaten down emotionally and with Seth’s face full of red dots. It has gotten progressively better. And now we have this video today. 

Overcoming fear through the force


 

Through prayer, perserverance and a long-suffering stylist, Lucia, you too can see this miracle happen. 

Everyone had a good experience today. 

Kyle with a haircut and a smile

Jackson with a sucker

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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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