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? 

We all show our family that we love them in different ways. Another way that you can show your love for them is to show them that you care about them even after you are gone. The hard reality is that we are all going to leave this earth and we don’t know when. I have a friend whose husband unexpectedly passed when they were 27 years old and she had 3 month old twins to take care of. It doesn’t matter what stage of life you are in, you need to be prepared.

Each person makes their own decision how to prepare for the end from an emotional and spiritual aspect, but here are some practical steps to be prepared from a financial and administrative perspective.

1. Have a will.

Even if you don’t think you have a lot of assets, you need to have a will because you don’t want the State to dictate what happens to your property after you are gone. You have the opportunity now to take that responsibility. It will save your family a lot of time and grief knowing your wishes, because getting an estate in order after someone has passed can take a lot of time.  You may be surprised by how many possessions you own after completing a will.

It is good to discuss whom will care for your children if something should happen to both parents. It is certainly a hard decision and there are many factors to consider. I know one couple who does not tell anyone who the “godparents” are, because it isn’t a family member and they don’t want to hurt anyone’s feelings. This is one decision I DO NOT want left up to the State’s probate laws.

Myth: I have to go through a lawyer to get a will.
Fact: Right now you can download a state specific will from USLegalForms.com for $20. Then all you have to do is fill it out and have it notarized.

2. Have Term Life Insurance.

If someone depends on your income then it is best to take out a policy for 8 – 10 times your income. Then once the life insurance money has been issued, your family can invest the money in a good growth stock mutual fund and if it earns at least a 10% return, you can live off of the interest. Then the lost income is replaced.  Since I am a Stay at Home Mom, this gives me an enormous amount of peace knowing that I will be okay for money if something should happen to my husband.

For Stay at Home Moms a policy should be for about $250,000 to $400,000, because a mom’s work is valued at about $40,000 a year. (Although, it feels like it should be more!) The idea is that if something happens to the mother, then the father can afford a Nanny or Child Care while he continues to working.

Don’t assume you have life insurance through your work. Find out the details of any life insurance plan you or your spouse has through work.

Term Life Insurance is not that expensive. You can go to ZanderIns.com for a quote. Depending on your age and how much coverage you want it can be $30 to $55 a month.

Myth: Whole Life Insurance is a great idea, because I can invest my money at the same time.
Fact:  The truth is that the return on investments in a whole life policy are horrible and it is better to put that money in a mutual fund. Also, there is not a guarantee that your beneficiaries will receive the savings upon your death. For more information about Whole Life Insurance go here.

3. Make plans for your estate.

Making a will and planning for your estate go hand in hand.  Estate planning will allow you to decide who will get your house, cars, or anything else you want. Also, if you give your house as an inheritance to your kids, then you can avoid a high rate of gift tax. On daveramsey.com “The federal government allows someone to die and leave in their estate $2 million without any estate taxes. An individual can only give another individual $12,000 before getting gift-taxed out the ear unless they claim it as part of their estate before they die.”  You can read more about this here under the question “Is Inheritance The Way To Go?”

The estate planning process is also where you will set up any trusts that you want to leave for your kids. You can even make stipulations on whatever specific areas you want. You can specify the age that they get it and how much or that it be used to pay for college.

Myth: Estate planning is only for rich people.
Fact:  The truth is that you may be surprised by how much you have. You need to make plans for the term life insurance money or if you own a home.

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Last week I shared with you how I prepared myself for a 13.1 mile race.  Then, I did it! Here are a few things that caught me by surprise:

• I wasn’t anywhere near as nervous as I expected to be.
• I was literally the last person running for the entire first mile (slowest starter).
• Overall, it was easier than I expected it to be.  Oh trust me, it was still hard, but it was manageable.

I wrote a detailed post with more specifics on my personal blog, so I’ll link you to that, if you desire to know more.  Thanks for sharing in this experience with me, and if you participate in something like a half marathon, a 5 or 10K, or any other major athletic triumph, be sure to let us know in the comments.  Accomplishing a major physical goal is something to be so proud of! Have a great weekend, all! 

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!!