The Mom Crowd

When we found out Darah most likely had Down syndrome during my pregnancy, I immediately started my quest of finding out anything and everything there was to Down syndrome.  I am a research junkie and I have purchased more than a few books about Down syndrome.  I would love to share with you  my most favorite books about Down syndrome.  I strongly recommend any new or expectant parent of a baby with Down syndrome add these books to their library or at the very least check them out from their library.  Our local Down Syndrome Association has a library for parents to borrow books from; yours may have the same!  These books also make great gifts for grandparents,  extended family members, child care providers, etc… of babies born with Down syndrome.

Common Threads

• I have the coffee table version of this beautiful book, and I can’t wait until my children are old enough for me to actually keep it out without being destroyed.  This book was given to me after Darah was born and I was immediately encouraged by the beautiful pictures and stories.  I did not learn a whole lot about the medical issues or the developmental delays in my daughter from this book.  I learned the more important things. I learned how beautiful the life of a person with Down syndrome is and this book helped me so much during my early days of grieving.

Roadmap to Holland

• I wish I would have had this book when Darah was first born!  Jennifer Graf Gronberg writes about the first two years of raising her son with Down syndrome.  It is honest, insightful, and encouraging!  Every new parent needs to read this book! This book’s title is inspired by the incredibly well written depiction of having a child with special needs, “Welcome to Holland.“  I met Jennifer at a conference and she is such a genuine person.  My children stole me away from her, but I would have loved to have talked with her longer than our quick introductions!

Babies with Down Syndrome

• My wonderful local Down Syndrome Association mails this book to all new or expectant parents and I got my copy before Darah was born.  This book helped me learn everything there was to know about Down syndrome!  It clarifies common myths, explains in detail what Down syndrome is and how it occurs,  explains the different medical issues sometimes associated with Down syndrome, has adjusted weight and height charts for children with Down syndrome, talks about what medical exams a child with Down syndrome needs and when, and was basically my go-to book for a while with anything concerning Darah.

Early Communication Skills for Children with Down Syndrome

• The speech pathology student in me has to declare that this book is a must have!  I had the pleasure of attending Libby Kumin’s conference in Atlanta and again in Kansas City at the National Down Syndrome Congress Convention and she is the most knowledgeable, insightful Speech Pathologist I have ever met.  She seriously knows her stuff!  This book will really help you understand your child’s speech development and the best way to help them achieve speech and language milestones.  There are a lot of pre-speech activities in this book and it really is incredibly informative for parents of newborns all the way up to teenagers with Down syndrome!

Gross Motor Skills in Children with Down Syndrome

• This book has awesome milestone charts that tell you when you can expect your child with Down syndrome to achieve different milestones.  Even though you should not compare your child to any child, it is helpful to know an average age that you can expect certain milestones.  At this point in our Down syndrome journey, I am pretty laid back about developmental milestones, but during Darah’s first three years I was all about achieving the next milestone as quickly as possible.   This book kept me focused on what step came next as we got closer and closer to Darah learning to walk and postwalking skills.  It gives practical exercises to do with your child to strengthen his or her core muscles and help their gross motor development.

Fine Motor Skills in Children with Down Syndrome

• This is another great book to add to your library early.  I don’t like the layout as much as Gross Motor Skills in Children with Down syndrome, but it is still incredibly informative.  I have used this as my go-to resource for exercises, activities, and ideas to help Darah’s fine motor development.

I Can, Can You? 

• I love this book because it is a board book for Darah with children who all had Down syndrome like her!   All of Darah’s board books had children with the standard 46 chromosomes and it made me happy to have her chewing and reading a book that had kids who had 47 chromosomes like her!

We’ll Paint the Octopus Red

• I checked this book out at the library.  Since Darah was our first child, we did not have to introduce “Down syndrome” to her siblings when she was born.  However, I love this book and think any parent who has older children needs to give this to them after finding out their younger sibling has Down syndrome. It is endearing and encouraging for siblings of a child with Down syndrome.

Do you have any favorite books about Down syndrome? What do you love about them? 

If you have Mylicon Drops in your cabinet you need to check if they are ones being recalled. Apparently, some bits of metal have gotten into some bottles while manufacturing them.

This is from the Mylicon website:

JOHNSON & JOHNSON • MERCK CONSUMER PHARMACEUTICALS COMPANY ANNOUNCES URGENT VOLUNTARY NATIONWIDE RECALL OF INFANTS’ MYLICON® GAS RELIEF DYE FREE DROPS (SIMETHICONE-ANTIGAS) NON-STAINING DUE TO POSSIBLE METAL FRAGMENTS

Fort Washington, PA (November 10, 2008) – Johnson & Johnson • Merck Consumer Pharmaceuticals Company (JJMCP) is voluntarily recalling approximately 12,000 units of Infants’ MYLICON® GAS RELIEF DYE FREE drops (simethicone-antigas) non-staining sold in 1 oz. plastic bottles that were distributed after October 5, 2008 nationwide. The company is taking this action in consultation with the U.S. Food and Drug Administration (FDA). Although the potential for serious medical events is low, the company is implementing this recall to the consumer level as a precaution after determining that some bottles could include metal fragments that were generated during the manufacturing process. If any medical events were to occur, most are expected to be temporary and resolve without medical treatment. Parents who have given the product to their infant and are concerned should contact their health care provider immediately.

The two lots of Infants’ MYLICON® GAS RELIEF DYE FREE drops non-staining 1 oz. bottles included in the recall are:

Consumers can find the lot numbers on the bottom of the box containing the product and also on the lower left side of the sticker on the product bottle.

Consumers who purchased Infants’ MYLICON® GAS RELIEF DYE FREE drops non-staining included in this recall should immediately stop using the product and contact the company at 1-800-222-9435 (Monday – Friday, 8:00 a.m. – 8:00 p.m. EST) or via the internet at www.mylicon.com for instructions regarding how to dispose of the product and request a replacement or refund.

Infants’ MYLICON® drops are sold over-the counter, in retail stores and pharmacies, as an anti-gas medicine to relieve the discomfort of infant gas frequently caused by air swallowing or by certain formulas or foods.

The recall does not affect any Original Infants’ MYLICON® GAS RELIEF products (1/2 oz. or 1 oz. size) or Infants’ MYLICON® GAS RELIEF DYE FREE drops non-staining (1/2 oz. size).

The manufacturer has instructed retailers and wholesalers to return their inventories.

Well, maybe not everybody, but more and more families today are learning all about Early Childhood Intervention!  I entered the world of developmental therapy as soon as my first child came home from the hospital because she had Down syndrome and was 100% tube fed.  In my circle of friends with children with Down syndrome, therapy has been part of our normal day-to-day routine since our children’s birth.  However, in my circle of friends who have healthy, typical children, developmental delays are far from uncommon and I have watched many friends of typical children enter the world of therapy I once thought was isolated to only children with “special needs.”  One of the biggest reasons for this is people are recognizing the advantages of treating developmental delays early.

While it’s not uncommon for a child in any sandbox across the United States to be receiving some form of early intervention, nobody wants their child to have a developmental delay in any area.  Watching your child achieve developmental milestones is probably one of the most rewarding things about parenting!  When your child isn’t doing something that most of his peers are doing, it can be incredibly discouraging. It’s important to remember that typically, a delay in developmental milestones DOES NOT mean your child is not going to catch up!  Most children who receive early intervention services catch up to their peers in their area of difficulty and no one knows the difference from that point on!

If your child does have a diagnosis that is going to stick with him or her long-term, you are far from the end of the world!  I have a child who will always be behind her peers in most areas of development, however we wouldn’t change anything about her.  In fact, she has brought so much joy and delight to our family, that we are adopting another child with Down syndrome .   It took some adjustments because of continuous therapy, but we very much have a life outside of developmental therapy!

So, what exactly is Early Intervention?

• Early Intervention (sometimes called Early Childhood Intervention) was created by the United States Congress is 1986 to provide services for infants and toddlers under the age of 3 who have a developmental delay of any kind or a disability.

What services does Early Intervention provide?

• Physical Therapy {PT} – for children with gross motor delays {late sitting, late crawlers, late walkers, etc…}
• Occupation Therapy {OT} – for children with sensory issues, fine motor delays, feeding difficulty, cognitive delay, or a delay in social or emotional skills. {In very young infants, there is sometimes an overlap between OT and PT, so an Occupational Therapist may also treat some gross motor delays.}
• Speech Therapy {ST} – for children who are late to speak or have feeding difficulties
• Other services early intervention provides: Family education and counseling, Assistive technology devices and services, Audiology testing and services, Nursing services, Nutrition services, Psychological services, Service coordination, Social worker services, Vision evaluation and services, and some provide respite care for families!

What if my child is over 3 years old?

• If your child is 3 years old or older, they do not qualify for your state’s early intervention program.  However, they do qualify for services through your public school system!  Contact your school district if you suspect a delay in any area of your child’s development after they turn three years old.

Getting started

• If you think your child is taking a little too long in an area of their development, you can make either contact your child’s physician or you can contact your local early intervention provider.  You do not need your physician to refer your child for services.  You can find your local provider by going to your state’s website.  Here is Texas’ listing of early childhood intervention providers.  If you have trouble finding your early intervention provider, let me know and I will be happy to help!
• After you or your physician calls to make a referral, your early intervention provider will schedule a visit to your home to evaluate your child and determine if they are eligible for services.  If your child is determined to have a delay, he or she will start receiving services shortly after the  evaluation.  That simple!
• Remember that every child develops at a different rate and do not accomplish milestones at exactly the same rate.  If you have questions on whether your child is developing at an appropriate pace, contact your child’s pediatrician or your early intervention provider.

Here’s some more links for you!

• Developmental Milestones – Is This Typical?
• Bright Tots Early Childhood Intervention Information 
• Wrightslaw: Early Intervention and IDEA (Wrightslaw is the go-to source for what the law says about what services children with delays are entitled to receive.)

Do you know anyone whose child is receiving services from Early Intervention?  Has your child received services from Early Intervention?  Do you have any other experience with Early Intervention? 

• PS: In the spirit of National Adoption Month, I want to sneak this article in here (even though it has nothing to do with the topic at hand!) This article talks about the tax credit the IRS provides adopting families to help make adoption more affordable.  Most people don’t know that they can receive up to an $11,000 dollar for dollar reimbursement for their adoption expenses!!

Parent Hacks is one of my favorite websites, because it gives you practical tips to make your life as a parent a little easier. Here are few parent hacks of my own that I have used. I would love to hear some the creative ideas that you have come up with in the comment section.

1. Using return address labels on the back of wallet sized photos. I honestly do not want to write Annabelle’s name, age, and date on the back of 30 photos. So I like to print out the information I want on a clear return address label and stick it to the back of the photo. You don’t get any pen imprints or bleed through from writing on the back. It also makes the photos look more professional.

2. Parking next to a cart return when you go shopping. This was a huge help when I had to lug my baby around in a car seat. When I leave the store I like to put my baby in the car first, but I don’t want to leave her alone in the car while I return the cart. Also, you don’t have to carry a car seat or a wiggly toddler very far to get a cart when you arrive.

3. Bringing your ipod and speakers to the park. I like to take Annabelle to my neighborhood park, but it is usually empty and boring when I go by myself. So one time I brought my ipod and speakers with me. I could still keep my eyes on my daughter and I was able to listen to some good music at the same time. Annabelle would even dance to the music.

4. Giving your little one a snack at the grocery store. Ideally I would love to grocery shop without Annabelle, but that doesn’t always happen. My problem is keeping her in the shopping cart seat. She likes to stand up. My friend Sarah said that she gave her kids a Dum Dum when she went and that help to occupy them. Annabelle was driving me nuts one day, so I went over the candy aisle and opened a bag of Dum Dums and I gave her one. It occupied her for a while and I was thankful. I saw one of my friends feeding her two little ones eggrolls from the Chinese take-out stand. I have since tried bananas, dried pineapple and opening a bag of bread, but I still keep a few Dum Dums in my bag for when I am desperate.

5. Using 2×4′s to install a pressure mount baby gate onto two banisters without drilling. My husband and I did not want to drill into the banisters at the bottom of our stairs to install a gate, so we used zip ties to attach a 2×4 piece of scrap wood to each of the banisters. After installing the wood, it was really easy to put the baby gate in place.

Okay, these last two are for girls but maybe you could share them with a friend if you don’t have a girl.

6. Pairing dresses that are too short with a pair of pants. My daughter doesn’t grow out of clothes quickly, but sometimes dresses do get too short. I started pairing a dress with a pair of jeans underneath and I love it. I get more life out of her clothes and she looks cute.

7. Put a rubberband around the bottom of a hair clip to keep it in their hair. I can’t take full credit for this tip. I got it from the nice lady who runs a boutique here in my town. She told me to put a little rubberband on the bottom metal half of the bow to keep it from sliding in the hair. Every time I have done this it has worked.

Do you have any parent hacks that you like to use? Do you have a solution for my problem of keeping my 18 month old safe in a shopping cart? (ha!)

I had a friend recently email me asking what I thought about the different co-sleepers available and if I used one.  Then I thought it might make a good post!  Even if you are having your first, second, or third baby you might be on the hunt for a new or alternative sleeping arrangement rather than having the baby sleep in a different room from yourself.  Regardless of your parenting philosophy, many parents find that having baby nearby, sharing their bed, or right next to them is easier for night time feedings and those middle of the night diaper changes.Co-sleepers are similar to pack and plays in the way the look but they attach to the bed, giving the baby a special space of his/her own.  The co-sleeper is level with the bed which allows easy access for the mother or father to scoop up the baby when he/she is ready to eat, needs a diaper change, or just needs some attention.   

The Arms Reach Co-Sleeper has become rather popular for moms who are planning on breastfeeding and want easy access to their babies at night.  I asked a friend who has the Mini Co Sleeper and she raved about it. Her husband is a heavy sleeper and she didn’t feel comfortable having the baby in bed with them while he tossed and turned at night.  She also knew that she would sleep more comfortably if she had the freedom to move and change positions without worrying about waking up the baby.  She mentioned that the co sleeper was also helpful right after the baby was born because she had a c-section and it allowed her to only have to sit up in bed to feed the baby rather than have to get up and go across the room or into another room to get her baby before feeding him.  She said it was very helpful for her recovery and healing process.  Not only that, but it also helps her get through the whole feeding, diaper changing ritual faster which results in her getting a little more sleep.  And every mom with a newborn is thankful for as much sleep as possible! The only drawback she said about the co-sleeper is that in order to get out of bed you have to either get out on the side the co-sleeper isn’t attached to or slide down past it and then get out of bed.  She likes the mini co-sleeper because it takes up less room and you don’t have to go as far down to slide out of bed.   The Arms Reach co-sleepers are portable and break down similarly to a pack and play which make them appealing for travel as well. And some take up less room when broken down.      

Some parents like the feeling of closeness created by having the baby in bed with them. An alternative to bedside co-sleepers is something called a Snuggle Nest.  A Snuggle Nest creates a place for the baby in your bed and provides some boundaries so pillows or blankets don’t get too close to the baby’s face. I have another friend who used this with one of her babies and she loves it. She likes being able to hear the baby breathe at night.   She used it her second baby until he started rolling around a lot and getting out of his swaddle.  It became too hard for him to stay in the little nest. She is also using it for her third baby and still loves it.  At night when the baby wakes up to nurse she slides her down from the Snuggle Nest and nurses the baby and then slides her back up after she is done.  It makes it easy to doze while the baby is nursing and easier for her to go back to sleep since she didn’t have to get out of bed.  The other plus my friend mentioned to me is that since the baby is so close by she can listen for whether or not the baby is due for a diaper change.        

We have always had our babies in the room with us for the first several months–our first had the shortest stay in our room–only about 31/2 months.  He slept in a pack and play near our bed.  Our second and third slept in bed with us until they were 4 months old and then moved into a bed (still in our room) until they were close to a year old.  One was moved to a pack and play, the other to a crib.  I liked not having to get up and go to another room to get them for feedings and I liked that they were nearby in case I needed or wanted to check on them at night.  I had contemplated getting a co-sleeper with our thrid but decided to see if I still wanted on after he was born.  I thought about borrowing one from someone, but I didn’t know anyone at the time who had one laying around.  We just did what worked for us as a family. Although I enjoyed the babies sleeping with us or near us, I was ecstatic when I finally had my own space and room back. It was so nice to be able to read in bed and not worry about making any other noises that might wake up the baby–if you know what I mean .

Where did your baby sleep after he/she was born? What worked for your family? What didn’t work?