The Mom Crowd

Sometimes babies need a little extra medical attention when they are born and need to stay in the Neonatal Intensive Care Unit. There are many reasons why a newborn would need to visit the NICU. The NICU can be an uncomfortable, scary, intimidating environment. I have spent 15 days in the NICU and many days in various hospital rooms. Some simple things like making sure every nurse in the hospital had our cell phone numbers, posting pictures of our family on my daughter’s bassinet, bringing in the mobile from her empty crib at home, and calling dibs on the next open comfy recliner made our stay more comfortable. There are many other things you can do to make your NICU stay less intimidating and more comfortable.

Create your own privacy

• NICU’s are typically the least private areas of the hospital. While being in a “fishbowl,” it’s important to create some privacy for you and your baby while you’re visiting. Most hospitals will provide screens that you can arrange around your child’s bassinet during breastfeeding or bonding time. Take advantage of those screens!

Kangaroo Care

• Kangaroo Care is a special type of bonding with your newborn. It’s basically just skin to skin holding by undressing your newborn and unbuttoning the front of your shirt. This is great for any newborn, but it’s especially important for babies who aren’t able to go home right after their births. Moms AND Dads can do Kangaroo Care. The benefits of Kangaroo Care can be found here.

This is YOUR baby, not the hospital’s

• When Darah was in the NICU, I felt like the hospital owned her. I wasn’t very proactive in her care because I felt like I would mess everything up. I wish I would have been stronger about voicing my concerns or insisting that I do her basic care when I was present. If you want to give your baby his or her bath or next feeding, then tell your nurse. Do not be late for these appointments because your nurse has other patients they need to attend to and most NICU’s operate in a very structured manner.

Learn the “rules”

• There is usually a limit on number of visitors, age of visitors, and who is allowed to hold the baby. Visitors (and parents) who are sick are to stay away and everyone must go through a hand-washing ritual with surgical scrub brushes.
• If you have a friend whose child is in the NICU, make sure you are following the rules. It made me frustrated when I had to remind people to wash their hands. If you’re a smoker, make sure you put a clean shirt on that you haven’t smoked in before visiting. Second hand smoke is the last thing any newborn needs, especially one with medical issues.

Go Home!

• Spending every minute of your day by your baby’s bassinet will deplete you of the energy you need when your baby comes home from the hospital. If you live far from your child’s hospital, look for the closest Ronald McDonald House and bunk there at night. I stayed at the RMH of Dallas for 6 weeks during one of Darah’s hospital stays, and was able to rest, eat (food they provided!), and meet other families so I was not so lonely.

Take care of YOU!

• You just had a baby and you need to recover (physically and emotionally)! Do not overdo it. If you’re having a hard time emotionally, ask your doctor for a support group of other moms in the NICU or suggestions on coping emotionally. Be watchful for signs of postpartum depression. Make sure you eat and are getting breaks from the hospital.

Most important: Ask questions!!!

• If you don’t understand something, keep asking for answers! If you are not comfortable with something, insist that you receive a better explanation. While these nurses and doctors probably do know more about your child’s health, this is YOUR child and you are an important player in their medical team. Keep a journal of your child’s medical information. Include feeding schedules, weight, medications, procedures, and any new diagnosis in this journal. Darah almost received a very wrong dosage of heart medication, but because my husband and I were aware of her medications, we interrupted what could have been catastrophic! After you leave the NICU, you will have a new title: Momologist, which is just as more important than any other “ologist” (pumonologist, cardiologist, hematologist, oncologist, neurologist, etc..) who takes care of you child!

Check out these informative sites:
Neonatal Nursery

When Your Child’s in the NICU

What has been your experience in the NICU? What helped make your stay more pleasant?

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 »

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?