The Mom Crowd

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?

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!

My daughter, Darah was tube fed for the first two years of her life. 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. 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 progress 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!
• 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

My husband and I recently had an unfortunate incident at Darah’s preschool. It’s a long story (and not the reason I’m writing this), but basically we decided we weren’t comfortable with having her go back to the same school. When we pulled Darah out of school, my husband and I started really pondering what was best for Darah and her educational needs. An unfortunate experience gave us a great opportunity to reevaluate the decisions we were making and make sure we weren’t just going with the flow, but that we were truly doing the best thing for our daughter. First of all, it must be reminded that Darah is not even four years old yet. We’re not talking about making a decision on what college or high school she attends, we’re talking about preschool. Through a ton of research and even more prayer, we decided that teaching her at home was the best thing for her. Everybody gets that cringe when they hear the word “homeschool.” This decision goes completely against what’s being preached in the special needs circles, because it is the opposite of inclusion. Darah is trying out another preschool two mornings a week for three hours each morning, but I am just waiting to see how it goes before I commit to that for next year. She will not be attending full time next year, unless I do a complete flip-flop.

I am not saying that this decision is the best decision for every other child. I am saying that this decision has been the best thing for Darah for right now. It is a hard decision because even though I feel like I’m doing the right thing, everyone has an opinion or a story about how homeschooling ruins children and even though I am confident that I know Darah and her needs better than anyone else, I don’t like feeling judged by other people.

During my quest to find the perfect decision for Darah’s education, I became quite intimate with google. I’m a concrete person, so I was looking for concrete answers. Unfortunately, it took some serious digging to find the amazing resources that are out there! I wanted to find an all-encompassing curriculum that told me exactly what to do on each day. The more I started digging, the more I learned that I was actually already doing a lot of the things I needed to be doing with Darah. I am already doing the See-and-Learn reading program that I raved to all of you about in this article. I also was already working on numbers, shapes, and colors with Darah. I was also already “teaching” her in our normal, everyday activities. When her toe comes out of her sandal, I teach her that her toe is “OUT” and needs to go back “IN!” When we outside, I show her the difference between her “LITTLE” toy car and the “BIG” car that drives by. When I give her a bath, we name all of her body parts and count her way-too-cute toes. These are all foundational concepts that are usually taught to preschoolers. I know that Darah is learning by living and I do not take that type of learning for granted because it is the main way all kids learn-through experiences. However, I am the type of person who needs a little more direction. I am goal driven and a list maker and need to know that these are priority numbers one, two and three. I want to feel like I know what I’m doing even if we’re very laid back in our approach to learning. I found some amazing resources that I would like to share with you if you are considering to teach your child at home. My philosophy is every parent is “homeschooling” their child in some fashion. Even if they are sending their child to traditional school, they are still working on homework after school, answering the million and one “why” questions, and teaching their children through everyday experiences. Read the rest of this entry »

Sign language has been an amazing communication tool for our family. Upon discovery that my daughter has Down syndrome, we were fairly certain that verbal communication was going to be delayed. As a result, we started teaching her sign language at a very young age. Darah is able to tell us when she is hungry, thirsty, hurt, sleepy, and when she wants a bath. She can also participate in “small talk” as well, by naming things she sees or wants like dogs, rain, stars, shoes, airplanes, and yogurt. Darah (at 3 1/2 years old) has over 200 signs now that she uses! Sign language has been such a gift for her and I am so happy that we introduced it to her! When Connor was born, signing was already part of our lives. Connor (now 15 months) learned signs pretty much by osmosis. I am surprised at the number of signs he’s learned just by observing Darah. The other day, Darah was in time-out and he decided to sit in time-out with her. When I allowed Darah to come out of time-out, he stood up and surprised me by signing “sorry.” I then drilled him some of Darah’s signs, and he knew “please,” “thank-you,” “dog,” and several other signs that I never once showed him. He also consistently uses “more,” “all done,” “eat,” “milk,” “bath,” and several other signs.

Babies as young as 10 months old can communicate with sign language. An ideal time to start introducing signs is when your baby is six months old. However, if your baby is older, it’s never too late! Here are some things that you should know when starting to teach your baby sign language.

Sign language will not impede your child’s speech development!

So many people think, “if I teach my baby to communicate with sign language, he is going to take longer to speak.” Actually, teaching your baby to sign will more than likely speed up his verbal communication. Before any child is ready to say their first words, there are some foundational skills that must be learned and some oral motor development that must take place. By teaching your baby to sign, you are teaching him the foundational skills required to communicate. By the time your baby is cognitively and physically ready to start saying words, he will be well ahead of his peers because of the communication foundation he’s already learned. These foundational skills include, but are not limited to:

• learning the concept of cause and effect

• understanding the concept of turn taking

• understanding that two or more words can be linked together, thus creating sentences (as in signing “more milk,” “big ball,” etc…)

Here’s a great article about the benefits of signing with your baby.

Reinforce with your spoken words!

When you sign with your baby, make sure you are saying and signing the word very clearly. Your baby is fascinated by your face; make it interesting by exaggerating your mouth movements. Be sure to talk to your baby all day long about anything and everything. By telling your baby about the train that’s passing by and talking about the yogurt and milk in the dairy aisle of the grocery store, you are reinforcing their receptive language skills.

Start off slowly

Begin by teaching your child 1-3 signs. “Milk,” “more,” “eat,” and “all done” are great signs to begin with because they are things that surround your baby’s daily life. Teach your baby signs that you have ample opportunities to use throughout the day.

Use your signs in context

It’s so much fun to show off our baby’s newest tricks, and sign language is a great way to capture those “oohs” and “ahhs!” However, make sure that when you are modeling or asking for a sign, it is in context. Asking your baby to sign “apple,” when he is neither hungry nor are there any apples around can potentially confuse your baby. The goal of teaching your baby sign language is to teach them a way to communicate their wants and needs, so make sure you keep it in context!

Don’t give up!

It is going to take you modeling a sign many many times before you see your child imitate. Keep going. Help your baby by doing hand-over-hand signing. This is where you take your baby’s hands in yours and do the sign together. Your baby will catch on! Just remember to be patient. Once they learn a few signs, it’ll get easier and easier to teach new ones. The first few take the longest to learn. Just make sure you’re consistent, enthusiastic, and give your child lots of praise for any attempts made. Your baby will have their “ah-ha” moment and will become a signing junkie!

May I recommend?

Baby Signing Time Volumes One and Two

These are excellent dvd’s which incorporate wonderful beginning signs with fun, catchy music. Both of my children love the Signing Times series and the Baby series is top-notch! Their website also has a lot of great information for parents who want to teach their babies to sign.

What has your experience been with sign language and your children?

I am an avid researcher when it comes to educating my children-especially my daughter who has Down syndrome. I want to give my daughter every head start she can get because a lot of milestones take her a little longer to achieve. I am fortunate to have attended two reading program workshops designed for children with Down syndrome. Both of these programs are whole language programs and are not phonetic programs. I found this site which explains the difference between phonetic reading programs and whole language reading programs. I think that a comprehensive approach is the best way to teach reading.

While these programs are designed for children with Down syndrome, I truly believe they can be used with any child of any learning ability. I feel that half the battle of teaching our child anything is finding some sort of direction. These programs do just that-provide guidance and direction for parents as they teach their children the very important skill of reading.

See-and-Learn

The first program I have learned about is called See-and-Learn. This program was developed by Frank Buckley in the United Kingdom by the Down Syndrome Educational Trust. Through much research, they have designed a reading program for very young children. This program is not a phonetic program and does not focus on shapes or sounds of individual letters. It is a sight-word based program and focuses on the shapes of entire words.

The reading program is divided into several steps:

• My First Words
• My First Reading
• My First Sentences

Each of these steps follow the same pattern:

• Let’s Look at the pictures or words
• Let’s Match the pictures or words
• Let’s Show we understand
• Let’s Say or Sign

See-and-Learn is a very well researched reading program and I love that they specialize in teaching children with Down syndrome how to read. The program is still being developed, however you can get started today! All of their pilot materials are online available for FREE download, as is the power point slides from the conference I attended. You can print activity guides, session records, and step guides at their website. This program is being developed in the United Kingdom, so some of the words may not be appropriate (ie: “biscuit” instead of “cracker.”) The Down Syndrome Educational Trust is working with a group in the United States to make the vocabulary more American friendly. Please check out their site and check out the pilot materials! I am hopeful that the program will be completed very soon and that I can start getting the full resources soon for Darah, however I have been able to use their program by making some modifications and have been happy to have the direction and motivation this program has given me.

Out of the Box

The second program I attended a workshop on was the Out of the Box reading program. This was one of the funnest workshops I have ever attended. The presenters (and creators) have incredible energy and enthusiasm about their program. Out of the Box reading program is also a whole language approach to teaching your child to read. This program emphasizes repetition. It is also geared toward children who have Down syndrome, but again, any child could benefit from this program. Basically, through HUGE flashcards, and consistent repetition, Out of the Box strives to teach very young children to read. My only con with this program is the cost. It is pretty expensive, however, all of the friends I have who have purchased this program have sworn by it and are seeing results. Here is a video of how this program works:

What are your thoughts on these programs?