The Mom Crowd

Over the last year, I have had two precious little girls in my life receive a diagnosis of leukemia. Both girls are doing well and are both in remission. One will still be receiving chemotherapy over the next couple of years though to make sure she stays in remission. I haven’t been able to help my friend who is local with babysitting her other children during hospital stays and chemotherapy treatments because of the demands (and constant viruses) of my two children which has left me feeling inadequate and wishing I could do more. These little girls are amazingly brave and my heroes. Their mothers have been such an inspiration to me and I consider it a privilege to have them in my life!

Even though I haven’t been able to physically help in ways I wish I could, I decided that I had almost a foot of hair that I could share with the ever-so-fabulous organization, Locks of Love. Locks of Love is a nonprofit organization that helps disadvantaged children suffering from medical hair loss. Most of these children have cancer or alopecia, a medical condition which causes hair loss. As moms, we all know the important role our hair plays in our confidence level. Through hair donations, Locks of Love creates hairpieces for children (both girls and boys) whose families are not financially able to purchase these expensive hairpieces. I am so excited to have participated in this mission by donating 11 inches of my hair to Locks of Love.

I will be honest, parting with my hair was not easy! I scheduled my appointment several times and chickened out because I really loved my long hair. I finally sucked it up and went in to cut my hair and share it with someone who would enjoy it even more than I did. I am so glad I did. It feels amazing to help a child in such a special way. Taking a risk and trying a new hairstyle is a very small sacrifice compared to what these children have had to sacrifice against their will. Besides, new styles are always fun to try! Katie Holmes, Jenny McCartney, and Victoria Beckham have made the bob super trendy and it’s so much easier to fix than my long, layered hair!

Ways to support Locks of Love:

• The most obvious way to get involved is to donate at least 10 inches of your hair. If your hair donation is shorter than 10 inches, bleached (highlights usually use bleach) or is naturally gray, they cannot use it for the hairpieces for children, however you can still donate it to offset the manufacturing costs. For more detailed information, please visit: www.locksoflove.org.
• You can also support Locks of Love by sending monetary donations, which are tax-deductible.
• Albertson’s Grocery donates 4% of all purchases to Locks of Love when shoppers use a special key tag. To receive your keytag, send your name and address to: volunteer@locksoflove.org
• Purchase this super cute charity bear. Ten percent of the gross proceeds are donated to Locks of Love.
• If you live in the Palm Beach County, Florida area, volunteer your time at their office.
• If you know of a child who has a chronic medical condition causing hair loss and financially disadvantaged, you can send their information to Locks of Love. Forms and more information is on their website.

This list is not all inclusive. For more ways to help Locks of Love, please visit their website. I want to end this post with a beautiful statistic I found on Locks of Love’s website. It is estimated that 80% of hair donations to Locks of Love come from children who want to help other children. I hope that my daughter will join that statistic when her hair is long enough to donate!

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?

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.