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Help Bring an Orphan Home!

by McKenna on September 8, 2008
category: Down syndrome,Promotion Codes,Special needs

raffle_2.jpg

The Mom Crowd is honored to be hosting a very exciting raffle!  One of our sponsors, Bethany from The Polkadot Platypus, is in the process of adopting a little girl from Russia who has Down syndrome.  Bethany and her husband will be traveling to meet their daughter within the next couple of weeks and will hopefully bring her home soon after that.  As most know, adoptions are very expensive.  We are hoping that this raffle will help raise funds to help with their substantial adoption costs.

As a way to thank you for your support of this great cause, we have over $2,000 worth of prizes to give away {see the slideshow below}.  Each raffle ticket purchased will enter you into a drawing for all of the wonderful prizes pictured below.   Raffle tickets are $5.00 each and the more raffle tickets you purchase, the more chances you will have to win these great prizes! We will be closing this raffle on Saturday, September 27th at midnight EST and will be announcing the winners on Monday, September 29th, 2008.

You can follow the Balsis’ adoption journey by visiting their blog: www.dreamingonanangel.blogspot.com

Don’t miss out on your chance to win one of these great prizes!

*There are two ways to purchase raffle tickets …

1. Electronically – Click on the “buy now” button below. {Note: When using Paypal, make sure the correct dollar amount for the number of raffle tickets you wish to purchase is displayed. You will need to click “Update Total” for the proper amount to be shown. Remember, each raffle ticket is $5.00.}  Winners will be contacted by their email addresses shown in Paypal.

2.  Snail mail – Checks, money order or cash may be mailed to the address below. Please include a note with your email address so that we can contact you if you win.

Payment must be received before the raffle ends on September 24th to be entered into the drawing for the raffle. Please make your check or money order out to “Balsis Family Adoption Fund”.

Balsis Family Adoption Fund
Raffle Tickets
PO Box 61
Washington, Virginia 22747

We would like to thank the following folks for co-hosting this raffle:

Also, thank you so much to the following companies for their generous donations:

Tropic Blunder! My Daughter IS NOT a Retard!

by McKenna on August 11, 2008
category: Down syndrome,In the news,Inspiration,Video

Today has been very busy! Late last week, I learned about this new movie, Tropic Blunder Thunder. It’s full of big name celebrities including Ben Stiller, Jack Black, Robert Downey, Jr., Matthew McConaughey, Tom Cruise, etc… The movie is a comedy making fun of actors. The main characters are actors in the movie, so there are “movies-within-the movie.” Tropic Thunder used one of these “movies-within-the-movie,” titled “Simple Jack” for a promotional campaign. Simple Jack was about a person with an intellectual disability and used hateful language and depicted his character in cruel ways. The promotional campaign included posters stating “Once upon a time, there was a retard” and a trailer for viewing which has Christine Taylor’s voice saying “I’ll talk to any retard I like.” During the production of the film, the cast discussed their concern about some of the racial slurs and wanted to make sure they didn’t cross the line with the racial banter, however they did nothing to protect anyone from the cruelty shown toward individuals with intellectual disabilities.

Major disability rights organizations discovered this and met with DreamWorks to discuss their concern and outrage over “Simple Jack.” The promotional campaign was pulled, however there were no changes to the movie made. In the movie, Tropic Thunder, Ben Stiller’s character discusses his role as Simple Jack with Robert Downey, Jr. They discuss how Stiller stated that while making the film, he actually felt retarded. The two characters exchange cruel banter filled with derogatory terms toward people with intellectual disabilities and ends with Downey, Jr. telling Stiller to “never go full retard.” You can read the script HERE and watch parts of this scene on the trailer HERE. Shortly after this script leaked, t-shirts were found on the internet with the slogan, “Never Go Full Retard.” There are many more issues with the movie and those who have previewed it, such as representatives of the National Down Syndrome Congress say that after watching the film, they felt “assaulted” and it is actually worse than the internet activists have been able to show.

The creators and cast of “Tropic Thunder” have chosen to continue on with the release of the movie on Wednesday, August 13th without making any changes or cuts to the film. They claim that the film is satire and “the movie’s humor was aimed not at the disabled but at the foolishness of actors who will go to any length in advancing their careers.” Ha! There’s some irony for ya!

Timothy Shriver, chairman of the Special Olympics, wrote the most wonderful article in the Washington Post today. He describes the cruelty that is shown in our society toward people with intellectual disabilities. I was startled to learn that “Gallup found that more than 60 percent of Americans don’t want a person with an intellectual disability at their child’s school. ” We’ve come so far and I’m so happy we are not the society of 50 years ago, but in a society that aborts over 90% of prenatally diagnosed babies with Down syndrome it’s hard to say that we’ve arrived to the place of acceptance toward people with intellectual differences.

While freedom of speech is one of our greatest gifts, I am hoping that we as a society can make the word “retard” and the abuse of the word “retarded” taboo. I hope that we can teach our children that it is never ok to make fun of someone with intellectual disabilities, whether it is direct or indirect. I hope that we can choose to not do the “PC eyeroll” at people fighting the abuse of the words “mental retardation.” I hope that we will tell Hollywood what is funny and what is not funny. This is not about being “politically correct” this is about dignity and respect.

What am I doing about it?

  • Blogging about this has been a way for me to create awareness and vent my frustration about this film and the abuse of my daughter’s medical diagnosis of mental retardation.
  • Online forums and communities have also been an area I have been making a strong presence in. This has been a great way to get more up-to-date information and get ideas on how to make some changes. There is power in numbers!
  • Boycotting the film. While this may or may not keep a large number of people from seeing this film, it will keep those who love my daughter from watching it. For every 1 person who is interested in this film because of the negative attention it is receiving, I hope that 5 people will be turned off of the movie.
  • I am waiting to see what The ARC and my local Down Syndrome Association recommends regarding physically protesting at the movie theater. If I make a public appearance, I plan on having information handy (and will be calling our news station that did the interview again!)
  • Contacting every local news source has proven to be successful as well!

I expect a lot of people to think I’m being extreme, oversensitive, and time-wasting. However, most people that would think that don’t have a little girl who is going to come home from the playground someday crying because she was called a retard. Most people don’t have typical sons who are going to come home crying because someone called their sister a retard. Although, the name-calling that is bound to ensue my children’s future is the “best case scenario” for my kids. Most people are unaware at the cruel, hateful, violent, dangerous acts that are committed against people with intellectual differences all the time. According to The Arc’s Q&A on abuse of children with intellectual disabilities, the statistics are that children with intellectual disabilites are 4-10 times more likely than non-disabled peers to be victims of crime and twice as likely to be victims of physically and sexual abuse.

The bottom line is this. My beautiful daughter, Darah who has an intellectual disability IS NOT a “retard.” That word has no place in any of our vocabulary, and Hollywood needs to understand that while my daughter does not yet have a voice to stand up for herself, she has a Mamma! And this Mamma is not going to sit back and allow her baby girl to be the butt of the joke!

I’m back from Boston!

by McKenna on July 15, 2008
category: Down syndrome,Special needs,Travel

This past week, our whole family attended the National Down Syndrome Congress’ (NDSC) annual conference. This is the third year I have gone. This year’s convention was held in Boston, Massachusetts. I can’t say enough great things about visiting Boston. The Boston area is so rich in American history! The kids did so well on the trip. My fears were Connor on the plane, Connor going to sleep at night, and Darah becoming overstimulated. Connor LOVED flying and went to bed like a champ. We didn’t have to put his crib in the bathroom like I thought we would, and we even got to keep the television on while he slept right through it! Darah did have one really horrific day and didn’t do so well on the plane trip home, but all in all, she did 100 times better than I expected! On a scale of 1-10, Connor got a “10″ and Darah got a “6.5″ after all was said and done. That’s not too bad!

The NDSC put on a great conference and I came home with a lot of information. I attended a workshop about gross motor skills post walking led by Pat Winders. Pat is a physical therapist who has done so much research on children with Down syndrome and how their gross motor skills develop. Another workshop I attended was all about Obstructive Sleep Apnea (OSA). Dr. Sally Shott is an ENT physician from Cincinnati who specializes in children with Down syndrome. She spoke about treatment options and other related issues to OSA. I am excited to share all the information I have learned on OSA, but that will be saved for another post! This is just a glimmer of the education I received while I was in Boston, and I’m anxiously awaiting for the audio of the workshops I wasn’t able to attend.

Another cool thing that happened in Boston was meeting again and talking with Denise from eReadingPro, which is one of The Mom Crowd’s sponsors and the reason Darah is doing so well with her reading. It was great talking with her one-on-one and meeting her other half. We left the day she had her workshop, or I so would have been there! She’s a ton of fun!  Actually, I spent most of my time with another one of our sponsors, Bethany, from The Polkadot Platypus!  In the picture above, she is the second from the left.  She’s my twin!

The very best part of my trip was meeting up with old friends and making new friends! I have made a lot of online friends through an online forum for parents of children with Down syndrome. This group has been the most amazing family and has given me so much support and encouragement. I have formed some of my closest friendships from this online group and it’s been great to reunite with these friends in person! I was able to meet some people in real life for the first time. It was so great to see these pictures and personalities come to life! Darah’s extra chromosome and the internet has connected me with a very special family!

If you have a child with Down syndrome, I strongly encourage you to attend one of these national conferences. You will walk away with a wealth of information and will have made new life-long friends. Here’s some points to consider:

  • Book your hotel early! We had to stay at a hotel across the street because the conference hotel fills up fast!
  • Check with your local group to see if they provide scholarships or grants for families attending the conference. Some groups will pay a grant in exchange for you writing up an article for their newsletter on what you learned. Other groups will send their top volunteers to the conference! That is how I paid for my first two conferences! President Bush’s stimulus check paid for a chunk of this year’s conference!
  • Make it a family vacation! There are grandparent workshops, a whole separate conference for individuals with Down syndrome and a separate conference for siblings of individuals with Down syndrome.
  • If you are not able to attend, think about purchasing the c.d. from the conference and listening to the workshops!

2009′s conference will be in Sacramento, California from July 31-August 2. I’m booking my hotel as soon as they post the information!

Have you ever met any online friends IRL (in real life)? What was that like? Did you attend this year’s conference? What did you think?

My 3 Year Old is Reading!

reading_a_book.jpg The reading program I was working on with Darah is still in pilot mode and it was getting difficult to progress past the point we had made it to. I loved the program, but needed something that was a little more complete. I began a new reading program with Darah a few weeks ago. I wrote an article reviewing Out of the Box reading a while back. The company has now changed and is called eReadingPro. They are one of our newest advertising sponsors. The only problem I had with Out of the Box was the cost. eReadingPro has modified their program to accommodate tightwads like me people who are wanting to try it out first before making the big investment. Well, I am a total believer and believe that it is worth the big investment!

I purchased the eBook Do-it-yourself Reading Program Book 1. I paid through paypal and the program conveniently arrived in my email inbox before my paypal receipt arrived! Talk about fast! I quickly downloaded my eBook and got to reading. I had the advantage of having attended their Out of the Box conference, so I had a basic understanding of the program and how it works. The eBook came with everything you need to know to get started and 178 days worth of lessons. It included pictures for some of the abstract words being taught and illustrations for books later on. I got to work making my flashcards and started the program a few days later. This program is a sight-word based program and is not a phonics program.

So how does it work?

ereadingprologo.jpg This program is geared toward the visual learner. Children with Down syndrome, autism, dyslexia, and an “overwhelming percentage of the population” are often visual learners. While many parents of children with special needs have embraced this program, they have a series for typical developing children as well. It does take some time to get it all set up, but once you set up the program you are good to go. I should be completely set for 178 days and then I will purchase Book 2. You can purchase the program with the flashcards preprinted. I saved a little money by writing them out myself. I keep the flashcards in order in a basket on my refrigerator and look at my daily schedule of what flashcards to present that day. I then show Darah the flashcards three times a day. As simplistic as it sounds, it works! By presenting these gigantic flashcards in groups of 5 over a cumulative 10 minutes a day, Darah has learned about 13 sight words! We are currently working on learning single words, but we will soon progress to learning to read sentences. The best part of this program is it has improved her speech! When she sees the flashcard with the word on it, she is articulating so much better than she did before. Her little voice is just way too cute when she says “pancake.” I am seeing results MUCH FASTER than with the other program we were doing. It requires much less energy and time on my part as well, and Darah seems to engage very well to this program.

eReadingPro will soon be releasing reading programs for teens/youth, adults who are learning to read, and for children and youth who are learning English as a second language. The whole word approach to learning to read is a very effective method! We are also working on phonics and individual letters. For phonics, I strongly recommend this DVD and this toy!

Tube Feeding Your Child

My daughter, Darah was tube fed for the first two years of her life. Darah's OG Tube Most people had absolutely no idea what her feeding tube was and I got a lot of stares or quick “look aways” and a lot of questions about what those tubes were for. Darah was born with a very serious heart defect. This heart defect made her incredibly tired. In addition to her heart defect, she also has low muscle tone, because she had Down syndrome. The combination of low muscle tone and her exhaustion from her heart defect made her suck/swallow/breathe coordination impossible. From day one, we had to sustain her life by using a feeding tube.

The first feeding tube we used was an Oral Gastric (OG) tube and after about a month, Darah graduated to a Naso Gastric (NG) tube. The OG tube is a feeding tube that is inserted in the mouth, down the esophagus, into the stomach. The NG tube is inserted through the nostril, down the esophagus, and into the stomach. With a syringe (or pump), we were able to pour my breastmilk or formula into Darah’s stomach. Darah’s open heart surgery was not until she was three months old, so she received all of her nourishment through her feeding tube. The NG Tube made her very sensitive to anything coming near her face or mouth. Darah's NG Tube This oral aversion led to a surgically placed feeding tube when she was five months old. This G-tube allowed us to give Darah her necessary calories and fluids and attempt to work on feeding. She started off with a Peg Tube, which is a feeding tube in the tummy that has a permanent extension tube attached to it. After that healed, 6 weeks later, we switched that out for a Mic-key button. The best way to describe this is it’s just like a beach ball plug. It snaps shut when you’re not using it, and when you’re ready to access it you can unplug it and attach a tube extension to it.

Fast forward to Darah at 16 months old. She had made very minimal progr Darah's Peg Tube ess with oral feedings and we decided to attend a six-week inpatient, intensive feeding program in Dallas, Texas. This program (Our Children’s House at Baylor) was the best thing we ever did. When we completed our 6 week stay, Darah was taking all of her caloric needs orally. She still struggled with drinking, however she was taking all of her fluids orally by her second birthday. Her feeding tube was removed a few days before her second birthday! She now loves to eat and drink! (I never thought I’d be able to say that!)

If you are dealing with a feeding tube, or severe feeding issues, I strongly encourage you to do a few things:

  • Find support from other moms who have been there/done that! I found this great yahoo group that was always there for my questions and concerns.
  • Don’t go it alone! Ask close friends or family to learn how to feed your child. By training a few people, you can get those much needed breaks from the whole feeding process. Most people will be happy to learn and to help.
  • Ask questions! If you aren’t comfortable with your doctor’s advice, get a second opinion. G-tube surgeries are done a lot, however it is still major surgery. So, ask questions! Remember that this is YOUR baby! It’s so easy to forget that when you have a child with multiple health issues.
  • Get lots of “extras!” Every time you’re in the hospital or doctor’s office, make sure you pick up a spare g-tube, extensions, and syringes! Darah's G-tube button
  • Find an EXCELLENT Speech Pathologist and Occupational Therapist. Don’t be afraid to “shop around.” Find a therapist who is a researcher and not afraid to think outside the box.
  • Don’t be easily offended. A lot of people stared at Darah’s tube because they just didn’t know what it was. If anyone asked me about it, I happily educated them on it. People don’t mean to offend when they stare (or quickly look away), they just don’t know what it is and don’t know how to respond.

I love answering questions about feeding tubes and would love for anyone to take the opportunity to share their tube-feeding story, experience, or question!

Here’s some more resources for you:

Tummy Tunnels

New Visions-Children with Feeding Tubes

Kids with Tubes

Little Bites Support Group

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