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Spread the Word to END the Word!

by McKenna on March 31, 2009
category: Down syndrome,In the news,Inspiration,Special needs

r-word-graphic.jpg 3.31.09. Today is the first ever “Spread the Word to End the Word!” I am excited to celebrate this awesome day with all of The Mom Crowd readers! As you know, the word “retard” is abused and misused by so many people. Most people use the r-word as slang or tongue in cheek, however, it is disparaging and hurtful to the millions of people with intellectual disabilities, their friends, and their families.

Spread the Word to End the Word is a campaign created by young people with and without intellectual disabilities to create a societal taboo on the r-word. The Special Olympics and John C. McGinley (Dr. Perry Cox on Scrubs) are endorsing and publicly representing this campaign. Rallies are being held in work places, high schools, middle schools, elementary schools, and colleges around the world. The state of Delaware will be asking all 40,000 high school students to pledge to not use the r-word in their vocabulary.

I challenge you to not just roll your eyes thinking this is yet another political correctness movement. I challenge you to hear the words of those with intellectual disabilities, their friends and their families. I challenge you to remove the word from your language that destroys the dignity of so many individuals in our world. I challenge you to “Spread the Word to END the Word” today and tomorrow and the days to come!!!

Any mother would be proud to be Soeren Palumbo’s mom! This kid has defined why the r-word is so offensive. I hope you will watch this high school student’s amazing speech!

I will close this with a personal message from Dr. Cox err…John C. McGinley:

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Reece’s Rainbow Christmas Angel Tree Project

angel-tree-logo-blue.jpg As many of you know, our family is adopting a child through Reece’s Rainbow and a while ago, The Mom Crowd hosted a raffle to help bring another child from Reece’s Rainbow home.  You can catch up with this beautiful family and their new daughter, Addison {AKA: Nika} at their family blog.  Is that enough “hyperlinking” for ya?

I wanted to take a moment to share with you about Reece’s Rainbow and their mission.  Reece’s Rainbow is a nonprofit organization whose mission is to raise awareness regarding the plight of children with Down syndrome in foreign orphanages and their availability to be adopted, to raise adoption grants for waiting children, to seek out adoptive families for these children, to help adopting families during their adoption process with fund raising opportunities and paperwork assistance {and emotional support-I threw that one in!}, to provide humanitarian aid to foreign orphanages, to facilitate support groups for birth parents of children with Down syndrome to help decrease the number of children placed in orphanages, and to enact social change abroad about children with Down syndrome and other special needs through the testimony of adoption.

In 2006, Reece’s Rainbow expanded from an outreach program for families with children with Down syndrome in Atlanta to an organization promoting international adoption of children with Down syndrome.   In the short two years since beginning this new focus, over 120 children with Down syndrome and other special needs have found forever families with the help of Reece’s Rainbow. As of June 2008, they have dispersed over $86,000 to adopting families and have waiting children with substantial grants ready for their prospective parents.  Many orphans around the world are not receiving adequate nutrition and health care.  In Eastern European and other countries, orphans with Down syndrome are commonly transferred to mental institutions if they are not adopted by the age of four. After they are transferred, most die within the first year from lack of basic care.

There is a special way you can help Reece’s Rainbow fulfill their mission.  Every year, Reece’s Rainbow hosts a Christmas Angel Tree Project.  Right now, you can see every child with Down syndrome waiting for a family through Reece’s Rainbow and sponsor one or more of them for Christmas.  With every $35 donation, you will receive a special ornament with a picture of the child you are sponsoring for Christmas.  Will you consider sponsoring an orphan with Down syndrome this Christmas?  In order to receive an ornament, donations must be received by December 15th.  Please visit their site today and help bring an orphan home for Christmas!

My Most Favorite Books About Down Syndrome

by McKenna on November 17, 2008
category: 0 – 1 year (baby),Down syndrome,Product Reviews,Special needs

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 coverweb_2840.jpg

  • 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 roadmap.jpg

  • 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

  • babies_with_down_syndrome3.jpg 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 early_communication_skills_for_children_with_down_syndrome.jpg

  • 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 gross_motor_skills_in_children_with_down_syndrome.jpg

  • 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 fine_motor_skills_for_children_with_down_syndrome.jpg

  • 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_can_can_you.jpg 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 well_paint_the_octopus_red.jpg

  • 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? 

Early Childhood Intervention – Everybody’s Doing It!

1070264_child_on_ranch.jpg 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!

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!!

Dick and Rick Hoyt – How To Love Your Children!

by McKenna on October 14, 2008
category: Health and Fitness,Husbands and Dads,Inspiration,Special needs

Dick Hoyt is one of the most inspirational parents I have ever heard of.  Their story is so empowering and inspiring.  My husband told me about them after reading about them in his Sports Illustrated magazine a while ago.  When I think of how to love my children, this is the picture that comes to my mind now.  I hope to give my child the amount of love Dick gives to Rick.  Rick was born with Cerebral Palsy.  While doctors encouraged Dick and his wife to place Rick in an institution, they knew that their son belonged in their home with their family.  When Rick learned to talk with computer assistance, he told his dad he wanted to compete in races.  Rick’s amazing dad competed in the Ironman Triathalon with his son.  The last part of this video will surely force you to find some tissues if you haven’t already needed them.  You can learn more about this dynamic duo at their website: Team Hoyt.

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