Today

I have been doing a lot of posting and linking over on our Facebook page, and realized that I had not touched this page for too long... The Angel Unaware giveaway came off beautifully, but I have not heard back from "Kelly" I commented on her blog, but I cannot find her email....if this is you, please email me at underwater9800 (at) gmail.com!! I'd love to get you your book!! I am disappointed in the lack of response for the possible giveaway in conjunction with the Designer Genes...I am trying to figure out a back-up plan...I'll let you know the status on that... Would you mind to comment here or on the Facebook page of how old your lovies with a bonus chromosome or other disability is? So I know if we actually have maybe a tighter grouping of ages? It will affect my ideas...Thanks!! We have some of our community that really need your prayers!! Please look at the Opportunities tab for more to the story! I am waiting on a phone call concerning Elise's school situation for next year. I will let you know more later. Please join with me to pray for the right changes for her!! I promise more soon...but I didn't want to think that I had abandoned you!! :)

Happy World Down Syndrome Day 2011

I am pleased to wish you Happy Down Syndrome Day!!! I did not know about this last year...gotta love Facebook, huh? There is some excuse for a party every few days... :)

BUT, I as I have taken every excuse to celebrate my girl and "dis" the establishment who tries to scare the Downs out of everybody's life....how much better than a WORLD acknowledgement of their beauty and their magical impact on our lives!?!?

I saw for the first time, the funniest T-shirt this week. "Don't Dis My ABILITY!" I got so incredibly tickled by it!! So to celebrate today, other than my totally awesome giveaway (if I do say so myself!), I decided to list some of Elise's latest accomplishments!

Elise's ABILITIES:
1) Elise can say her last name!
2) Elise can spell her first name!
3) Elise has more than 30 words that she can sight read!
4) Elise can curry a horse
5) Elise can muck out a horse stall
6) Elise can count up to 12 (and then to 20 but it gets a little patchy after 12!)
7) Elise knows the sounds to all the letters in the alphabet
8) Elise can go potty and take care of everything but the fasteners
9) Elise can do simple math
10) Elise can get away with more than any one human should be able to
11) Elise can break steel ball bearings due to her persistence
12) Elise can take her shoes and socks off in 3 seconds flat
13) Elise can put hats on her Playmobil figures
14) Elise can turn on the Playstation, the TV, the audio system, put in a DVD, select it, and watch it with joy
15) Elise can operate my iPod more easily than my parents and my in-laws
16) Elise knows her way around a computer
17) Elise can enjoy a book being read to her with a more magnetic concentration than anyone I know
18) Elise can exude joy at such a magnitude that you can feel it against you "like tall grass"
19) Elise can ask questions in such an abbreviated manner, you comprehend the "Much-ness" of the simple questions
21) Elise can give her love abruptly and completely to random strangers that truly need it and she seems to know, unfailingly, who really needs it!

For those who would like a simple education, THIS is what Down Syndrome is, technically.

For those who want to know what it is like to live with someone with Down Syndrome, here is a quote that quite sums it up for me today.

"The Lord's goodness surrounds us at every moment. I walk through it almost with difficulty, as through thick grass and flowers." - R. W. Barber

I am also going to unabashedly steal and tweak a quote from a friend since the sentiment is more than applicable (Thanks, Renee!):

When I was pregnant with Elise, I was 26 years old. We had a 1 in 1433 chance of having a child with Down Syndrome. We hit the jackpot!

Business Day

I have two giveaways in the works!

The Dale Evans book Angel Unaware

and the Designer Genes one

I have decided to extend the Angel Unaware to World Down Syndrome Day, March 21! So make sure you are entered!! Comment here, on the original post, or on the Just a Little Bit Downsy Facebook page; or all 3!!! (If Google is having a bad day and you don't Facebook, you can email me your entry, too!) This book is not just for those who have people with Down Syndrome in our lives!! It's for everyone!! Really, it is beautiful and you really need to read it!!!

The Designer Genes one? I need more pictures of your cuties rockin' that extra gene with flair! Thank you to those who have sent in your pictures already! (Make sure that you send written permission to post your pictures!) Also, in my head, I had new or handmade stuff to be offered for the aged giveaways, but in the spirit of my commentary of how you can dress with style cheap, your hand-me-downs would be great, too!! Thank you to Ellie's mama for offering a pre-rocked Gymboree outfit and giving me that idea!! Check out your babe's closets! If they are anything like mine, half is all out-grown anyway! Funny shirts and snazzy socks? Come-on, I know you've got something!!

I look forward to celebrating with you!!

Designer Genes and Designer Jeans

We've all seen them. People with disabilities that are dressed horribly, with bad haircuts, who LOOK like they have disabilities, from a distance! Clothes that underscore the fact that they DON'T look like everybody else and awful hair cuts make me nuts. With all the resources out there, you can dress your child inexpensively and you can get cute stuff!! I know!! I am the queen of consignment sales and hand-me-downs!

Please don't tell me that your child has to have a bowl cut from the 70's and sweats, because they don't! Elise is not a girly girl, so bows and skirts have been off the table for...well, ever since she could say "no"! I am standing here to tell you however, jeans can be flattering if you shop long enough. There are yoga pants or exercise suits if they want the soft and squishy option. There are flattering colors, and colored hair elastics.

If your child is willing, a hair bow or a cute hat will go a long way. Wouldn't you love your child to be stared at for rocking a fantastic bow? Or a handsome rugby shirt? Instead of a horrible haircut? Or 80's ginormous eye-glasses frames??

Seriously, this was my pet peeve even before I had Elise. I hate it when parents don't try for their kids with special needs. Even if thay advocate for them and love them, trying a little bit more in the mornings will be a support with their interactions with peers that many of them forget! Elise has had more conversations with other (typical!) kids at Kroger over her Twinkle Toes shoes (that I bought for $10 used!) than ever before!

I am proud to say not everyone falls into this trap...and I would say that I see it less and less as the years go by...but it is still out there more than I care to admit!!

I would like to give a "shout" out to those that I have seen that go out of their way to make people stare at their kids style more than their disability!

The most recently famous is Nella.
But also cheer the styling of Ellie Bear, Ben, Rozie, Sean, Angela, Alex, and Axel!

Now don't get me wrong, I am not saying we should over dress our kids. I am not saying that they should all be cookie cutters of perfect. I'm not saying that hair cuts are not a nightmare that may perhaps result in not cutting for too long, or a weird cut due to thrashing about during a cutting. I am certainly not saying that sensory or just personal style may not have an impact...but there are ALWAYS options that can be made to tweak their own styles!

So I challenge you to help your kids WORK their own style! And don't throw up your hands because it makes it extra work. It is worth it, for their own sense of self, and how the world sees them...whether it should or not.

I am going to do a stylin' giveaway...but I need help. I would LIKE to do an age-appropriate giveaway in April... One item to amp up somebody's style in every age group! FOR THE KIDS!!! I've already got tween/adult male and female covered. Could I get any volunteers for kids? Infant up to tween? Hats, Hair-bows? Really anything goes!! Please contact me with your donations. Please contact me at underwater9800@gmail.com.

Also!! If you're willing, I'd love to post a picture of your beauties working those designer genes!! Please send the pictures to the same email!

Thank you!!!

Awareness Brag

I have a story for you. The funny thing is that under normal circumstances, this wouldn't be encouaraged. AT ALL!

As I've said before, Elise has a behavior chart at school...It is traveling path with cars. As one might guess, it involves light colors, Green being a great day, Yellow being a day with a few little issues, and a Red day results from having one with either a couple of really bad choices or lots of little bad choices. Elise, at the beginning of the year, got Orange added to her day because she was going through too fast. (They can earn backwards, too, if there were no safety issues that needed to be driven home.)

Every day after school, she gets asked by me how her day was. At first, she didn't "get" it at all. Then, she had the final color put on her hand so she could remember. Now, she remembers and can mostly tell you what happened. (Well, in a word association game kind of way..)

Yesterday, I asked her how her day was and she chirps "GREEN day!!" and then skips and tells me "----, YELLOW day!!!" At first I missed it and was not properly enthusiastic, so she repeated herself, that her friend had a Yellow day...and I exclaimed that she should not rat out her friends...but the more I thought on it, the more pleased I was...in fact, even her teacher encouraged her in being observant...and it kinda threw me for a second. But honestly, being aware of oneself, and being aware of the comparison with someone else, is a developmental milestone. As usual, it's one that usually occurs when kids are tiny, but it is that awareness that leads to proper social interchanges. WHICH IS WHAT WE ARE WORKING ON!!!

So my brag this week? Elise knew what her own behavior was. Not only that? She knew what her friend's behavior was. Not only that? She knew that her day was better than her friend's day. AND she was proud of herself! After such a bumpy start, this is wonderful news! It gives me hope that she will continue to understand the impact of her decisions, and that the extrapolation of comparing her behaviors to others will result in her mimicking the positive behaviors.

WHEW!! The things I never thought I'd get excited about!! :)

Brag aBout! - Andrea

Hello Tiffany, here’s my form!

My precious child Gavin Stevenson Holmes, was born at 37 weeks and 6 days on September 14, 2010. My pregnancy went great, with some high blood pressure. We had been tested and tested with blood work and 4D ultrasounds at least once a month to try to calm my fears of the possibility of DS, as I was 38 years old. My husband and I had two miscarriages (including 3 babies) during the 18 months prior to the arrival of Gavin. We were so hopeful but knew nothing would change our love for this precious boy! Things turned from good to very bad the night he was delivered, as my O2 sat dropped from a BAD epidural and Gavin’s heart rate dropped to 38! After being rushed to surgery for a c-section, Gavin was born at 5:35 am, after 12 ½ hours of labor. I begged and pleaded with everyone to tell me the truth (even the good doc) that my son was ok and normal. It wasn’t until 2 hours later that the pediatrician came in holding Gavin and explained to us the diagnosis of what I thought would devastate me as a mother.

Gavin was born with Down Syndrome, PDA, VSD, tracheomalacia, laryngomalacia and total hearing loss. Not only did this beautiful baby have a rough road ahead of him, he couldn’t hear Mom and Dad. Keep in mind that I am a very “pushy” and stubborn parent and will not take no for an answer. Gavin was started immediately in occupational therapy and also had hearing test once per month. At the age of 2 months and 3 weeks I begged the most experienced ENT in town to please put tubes in my baby. Reluctantly he agreed when I knew he wanted to run very far away from me. On December 30, 2010 Gavin had tubes placed and woke up from surgery with full hearing, while his Mommy rocked him awake in the recovery room. All the nurses wanted to know what on earth I told the doctor to get him to do the surgery, I was just persistent, but realized that Gavin quite possibly has opened doors for many other children to hear and not get developmentally behind! How cool is that? You can see the results of his surgery on YouTube at “Gavin Can Hear”. It was so amazing to see the happiness that sound brought to this child!

Gavin continues now to have occupational therapy twice per month. He has surpassed all his milestones so far with flying colors. He sleeps 9-10 hours a night, and rarely cries. We have our 6 month follow-up with the cardiologist next Tuesday and expect an A-OK that his PDA and VSD has repaired itself. Gavin has truly been a gift from God to Mom, Dad and the entire family. If someone would had told me that 100% without a doubt I would have had a DS baby one year ago I would have cried and thought it was the end of the world. Now today, I can never see myself anything but being Gavin’s Mommy. I am so excited to watch as he develops and amazes all of us in his journey.

Facebook...A Reminder!

Hey! Just thought I'd remind you, Just a Little Bit Downsy has a Facebook page all its own! I post all sorts of community stuff on it! Lots of reminders and links! Seriously! Make sure you are a "Fan" and you "Like" us!!!!

Jump through the hyper-link in the text or the badge in the side-bar!! :)

Celebrate Your Child's Latest Accomplishments!!

Fill out a Brag aBout Form and send it to me!! I'd love to feature your rockstar and have a mini-party for them!! :)

The "R" Word, and Why it Cuts

If you grew up in the 80's or 90's, you've probably heard the word "retarded" and perhaps even used it to hurt someone. If you did, I'm not here to yell at you and try and make you feel badly. I am not even pulling a Harry Potter today, and talking about "the word that shall not be named".

I have gotten a LOT of flack for the name of my blog. I am judged and written off. I have without a doubt, lost followers or fans. I was very deliberate when I chose the name, I got warnings and reprimands within the first few weeks from starting it. I chose it because I wanted everyone to know just how open I am willing to be. I want to be honest and not hide behind terminology. I want to tell you WHY parents are so "militant" about terminology and why they will jump down your throats for your carelessness. I wanted you to understand what our life really is. I wanted you to know how frivolous that diagnosis is to my value of my child. I love Elise for being her. I do not care if she is not what the world views as perfect. I do not care what you think if she has a meltdown in the middle of a store. I do not care what you think about when you hear the word "quality of life", because I know that she is a treasure beyond price!

I value Elise because she is perfect. She loves fully and completely, she is beautiful and a blessing. There is not a soul on this entire Earth that has no failings. There is not a person on Earth that can excel in all areas of life. If my daughter has to struggle more than the average bear to execute her dreams, then she appreciates them more than the average too. She will be very aware of her accomplishments and will be confident in her life.

Retarded used to mean something more simplistic than it does now. It was later used to give an explanation to educate the public. Later yet, it has been used to denigrate, cut, and attack; and it is this consequence that has caused the hue and cry. It used to mean that something or someone may take a little longer to succeed, but they would eventually meet the goal. Now it is the ultimate decree that someone is expendable and not of worth.

Because I am a veteran teacher of the public school system, I was most aware of the diagnosis/explanation. Because I am a word-a-phile, I found comfort in the original definition. As a parent of a child with THAT word in her diagnosis, I am hurt, decimated, and angered by the general and careless definition, because regardless of her IQ, my daughter is a value to her world. She may be a little more work, but she is unequivocally worth it.

I will not attack you if you slip into your 13-year-old self and you are careless. I will be hurt. I will probably correct you, if my mere presence does not make you correct yourself. If it is used against my child, I promise you that I will go Mama Bear on you. But, I encourage you to wipe this word from your vocabulary. I ask that you go mama bear on your kids, so they know what it really means. I beg that you explain to others how hurtful it is. I plead with you not to become anesthetized to the ultimate appraisal that the word "retarded" gives.

Ultimately, if you use that word, you are concluding that something is worthless and a waste. If that is used against a person, can you really wonder at the pain, anger, and defensiveness that it inspires in our community?

I hope that you will commit to not using the word "retarded" or it's variations. I hope that you will remember what it is you are really saying. If a you want something a little more concrete, please check out this site. I particularly like this page of explantion.

Please also take the time to read the article "Redefining Disability" on this page. It is such a great article!

Also, this was a really neat interview, and I really typically dislike Johnny Knoxville! (Thanks to my friend Laura who posted this up on Facebook!)



I hope that you will consider what I've said and take it to heart. Don't react to those who get angry. Do not defend yourself. Understand that it is not the words that are used, but the meanings that supersede the dictionary definition.

What I am talking about is more than political correctness. Love by action. Listen to the craving of respect. Give that respect.

Brag aBout - Cara

Hi Tiffany! Here is my brag form for you. So fun!

Benji is the love of our lives now, and he is eight months old. He is the baby of the family, and all his siblings more than adore him. They are Logan-11, Abigail-9, J.J.- 7, Anna Rose-4, and Mary-3.

Benji has been a healthy guy, and we are truly blessed. But he does have a small hole in his heart that we are praying is closed by his next visit. And he has struggled with sickness going straight to his little lungs- poor guy. He has had to be on lots of antibiotics for that. But he was completely protected for a couple of months, and we are so thankful to the Lord for that.

Right now, we are having so much fun watching all the new things he is doing. He loves to reach up for us to pick him up. He likes to say, da da and mama and other sounds a lot. He is sitting up without falling at all now and gets up on his own. We just know he is going to crawl any day. He gets up and rocks and rocks, but he just doesn't go yet. He loves to smile and is very social. He would much rather look at people and talk to them in his baby language than play with a toy. Although, he has recently discovered this new musical toy that we put in his pack-n-play, and he does love that. He pushes all of the buttons and makes it make music and noise.

Something funny he did recently was at the Dr. He was in for bronchitis, and the nurse was checking his oxygen level. She was wrapping it around his foot, and he was loving the attention. And he began to spit at her. It cracked us up. He kept doing it any time she messed with his foot. He knew that she thought it was funny, so he continued. She got the other nurse to come watch him. He also loves to grab onto my clothes in my closet on hangers and pull them off if I am carrying in there when picking out his clothes. We are so blessed to have him in our lives!!