The Mom Crowd

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?

My three year old daughter wears little orthotic braces to help give her stability and I am often asked what they are and why she has them. It must first be stated that Darah has the cutest feet in the entire world! She has little short sausage toes and these wide, fat, squishy feet that anyone would want to “This little piggie went to market” at! She also has a sweet little sandle toe gap between her first and second little sausage toes. Ok, I’ll stop gushing about how stinking cute her feet are now and get back to the orthotics.

Darah’s ankles pronate; meaning when she stands up, they roll inward. Here’s a picture of how they roll inward while she stands. The weight is distributed in an awkward way and longterm side effects of this can be hip and back problems. Try it! Stand up and roll your ankles inward. Can you feel awkward pressure all the way up to your knees and hips?

This problem is not limited to children with Down syndrome, however a lot of children with Down syndrome have this problem because they commonly also have hypotonia and looser joints. Orthotics and shoe inserts can really help a person with ankle pronation. There are different types of orthotics. Some give more support, others give less support. My daughter has Sure Step Orthotics. These are specifically made for children who have ankle pronation or have an unbalanced or uncoordinated gait which is causing them to be delayed in their gross motor development. They are made from a very flexible plastic and are lightly cushioned. The plastic covers the bottom of her foot (stopping right before her toes) and covers the backs and sides of her lower ankles. When she wears converse style tennis shoes, they are completely hidden. Darah walks so much better when she is wearing them. She has to wear socks under them at all times, and cannot wear them without shoes over them (because they are slippy), so the con to orthotics is the sweaty feet they produce during the summer time. She wears them whenever she leaves the house. I let her have barefoot play at home. She will not necessarily wear these for forever, however she may need some sort of shoe insert or arch support for the rest of her life due to the severity of her pronation. This equipment is covered by our insurance. They also come in very fun patterns!

Here’s a good article by Pat Winders (the Physical Therapy God in the Down syndrome world) on gross motor development for children with Down syndrome.

Let me know if you have any questions about our experience with Darah’s orthotics! I will be happy to share any other information I have (or can dig up) for you! Also, please share your experiences with your child’s orthotics! Our readers would love to hear your stories as well!

As the mother of two children with congenital heart defects, I pay extra close attention to changes with the American Heart Association (AHA) guidelines. At my children’s last cardiology visit, our cardiologist informed me of a huge change the AHA has made. Many (not all) cardiac patients have been advised until recently to take a special antibiotic prior to dental work or surgery of any kind due to the risk of endocarditis. Endocarditis is an infection in the heart’s valves or lining and is spread through the bloodstream. This is a very serious and life-threatening infection. Dental work or medical procedures are a very common way this bacteria is spread. Unfortunately, there hasn’t been enough research to prove that the prophylaxis antibiotic is effective in preventing this infection and antibiotics have their own set of risks. The AHA has now changed their guidelines and does not recommend prophylaxis antibiotics prior to procedures except for a very small number of cardiac patients.

My children’s cardiology practice is saying “no thank you” to the AHA’s new guidelines. While unnecessary use of antibiotics can cause allergic reactions and antibiotic resistance, some people feel that a one time dose of antibiotic prior to a procedure does not contribute to the antibiotic resistance issue. It is also feared that this is the AHA’s way of getting the necessary research done to know for sure whether the antibiotic is effective in stopping the spread of endocarditis. It was impossible to ethical perform research studies under the previous guidelines.

This is a huge controversy among many families and the medical community and a very important issue. I am curious to see how this all plays out. I am curious to see how many cardiologists agree with the AHA and how many disagree and continue to prescribe antibiotics for their patients prior to procedures. My children will continue to receive the antibiotic prior to procedures and dental work until I and their cardiologist feel more confident in this new change, however please check with your cardiologist to see what precautions from endocarditis he or she recommends.

The AHA’s current information and guidelines on endocarditis can be found here.

We love reading books at our house. Both my husband and I enjoy reading and have tried to pass our love for books to our kids. My mother read to me a lot when I was a child and as soon as I learned how to read I enjoyed picking out books from the library and getting them as gifts. When the boys were as little as 4 months old we started reading to them at bedtimes. It is part of our daily routine now and we even have started reading books during breakfast and lunch together. The boys like to pick out one or two books to read while they eat. Sometimes it is a little tricky as I try to nurse the baby, eat my own lunch, and read a book to them. I try to multi-task but sometimes I wish I had an extra hand! I digress…

We have collected quite a few books for the kids but there are a few that get re-read over and over again.

Some of the first books we loved are by Sandra Boynton. She seems to be inside the mind of children and writes great stories that are short, sweet, and funny. I always enjoy reading Pajama Time because the rhymes and silliness are fun every time. Pajama Time, The Going to Bed Book, Snuggle Puppy, Dinosaurs Binkit, Snoozers, Hippos Go Beserk, But Not the Hippopotamus, and Wake Up are our favorites. One of the great things about Boynton books is that they are board books which makes them great for reading to children under 1 who like to chew and mouth books. 2,3, and even 4 year olds enjoy the story and looking at the pictures.

We have recently discovered the tales of Skippyjon Jones. These books are about a Siamese Kitty Cat who likes to pretend he is a Chihuahua. His ears are too big for his head and his head is too big for his body. In Skippyjon’s mind, THAT is what makes him a chihuahua. When he is pretending to be a chihuahua he takes on the name Skipito. He has a fabulous imagination and goes on many adventures. These books are fun to read to your kids as the sentences are silly and fun to listen to. The books also come with CD’s of the author reading the book outloud. The author includes little “songs” into the books as well. Here is an exerpt from Skippyjon Jones in the Doghouse:

“Oh my name is Skippito Friskito.

And I heard from a leetle birdito

That the doggies have fled

From the gobbling head

Who goes by the name Bobble-ito!”

My boys are 3 and 4 and they both love these books.

Dinosaurumpus! is also a new discovered favorite. “Shake, Shake Shudder through the sludgy old swamp, the dinosaurs are coming get ready to romp.” A bunch of different dinosaurs meet in the jungle to have a big fun dance together. Not only does this book teach you some of the different names of dinosaurs it also is a fun book to read. The pictures are full of color and fun to look at while you read the book.

I know the list could go on and on but I thought you could add some of your favorite books you like to read to your kids! What are your favorites?

The New York Times recently published an article about a 356-page recommendation written by safety experts to the Food and Drug Administration to ban “over-the-counter, multisymptom cough and cold medicines for children under 6.” The article never specifies who the safety experts are, except that they are internal to the F.D.A. The next step in the review process is to get an outside expert recommendation.

The article speaks about the marketing strategies of drug companies. Apparently, there is a huge market to target children, because they get sick far more often than adults. It makes sense why they would offer more products for children.

The concern is that some of these medicines may be ineffective or even harmful. The article suggests that the research that has been done is outdated.

One specific narcotic to treat pain and suppress cough, Hydrocone, is said to be unsafe and ineffective. The drug has a shaky approval history with the F.D.A. The F.D.A. is currently allowing Hydrocone to be marketed for children.

I find this interesting, because I just went to the doctor yesterday for medicine to treat my cough and viral infection. I am breastfeeding, so that limited what my ENT could give me. He gave me medicine that they give children and babies. Then he informed me about the symptoms of pneumonia and to call if I got any of those. That didn’t sound encouraging.

I don’t believe that we should fear all cough and cold medicines. I would be absolutely sure that I consulted with my pediatrician or at least called the nurse before giving my child a “multi-system cough and cold” medicine. What would I do if my child was in significant pain with a cough and cold on a Saturday night and I couldn’t get a hold of my pediatrician’s office until Monday morning? It depends on the situation. I would definitely research more natural remedies until I could see the doctor or stick with the medicine I am sure is safe.

What steps would you take in this situation? What do you think about the article? Should all “multi-system cough and cold” medicines be banned by the F.D.A.?

Read the full article here.