Let ARHIPP Pay Your Family Health Insurance Premium

 

 

First of all let me say ahead of time...I AM VERY SORRY.  I have completely dropped the ball on supplying this information to you, with that said lets get to the good stuff. 

 

What is ARHIPP?

 

The Arkansas Health Insurance Premium Payment (HIPP) program is sponsored by Arkansas Department of Human Services, Division of Medical Services. HIPP is designed to save money for Medicaid clients with high healthcare costs by reimbursing all or a portion of the cost of their health insurance provided by an employer or COBRA and by eliminating some of their out-of-pocket medical expenses. In some cases, clients may qualify to receive reimbursement for the premium cost of a family health insurance policy.

 

HIPP membership is completely free for those who qualify and does not affect eligibility for Medicaid.

 

Not currently insured through your job? When you qualify for HIPP, federal law makes it possible for you to enroll in employer-sponsored health insurance at any time of the year.

 

Do I Qualify?

 

The Arkansas HIPP program is specifically for qualifying Medicaid clients and their families who have access to group health insurance through a job or COBRA.

 

Other requirements:

• Your health insurance must cover at least 1 Medicaid beneficiary
• You must be able to provide the following Information along with your completed application:

-List of policy tiers and rates provided by your employer
-Policy number & group number
-Employer & employee share of premium cost
-Medicaid client(s) name & Medicaid identification number(s)

 



 

 

What are the benefits?

 

Arkansas Medicaid clients who enroll in HIPP will receive:

• Reimbursement for the monthly cost of all or a portion of group health insurance provided by a job or COBRA.
• Access to a wider network of doctors through group insurance coverage.
• Healthcare for your entire family, even family members who are not eligible for Medicaid, if found to be cost-effective for the State of Arkansas.

 

Can I receive benefits from Arkansas HIPP and Medicaid at the same time?

Yes. To qualify for the HIPP program, an applicant must be eligible for Medicaid within the state of Arkansas. You will have access to benefits from both programs for as long as you qualify for each program (separately).

 

Will Arkansas HIPP pay for my entire family’s health insurance coverage?

 In some cases, an applicant will qualify to be reimbursed for family health insurance coverage. This depends on the health insurance policies your employer provides as well as the family plan’s cost-effectiveness.

 

Insurance Covered by HIPP

To be eligible for the Arkansas HIPP program you must have access to group health insurance that is offered by a job or COBRA.

 

What is COBRA?

Consolidated Omnibus Budget Reconciliation Act (COBRA) is a federal law that allows former employees to continue health insurance coverage for 18 – 36 months after leaving a job. If an applicant has access to COBRA, the applicant meets the insurance requirement for Arkansas HIPP. If all other qualifications for participation are met, HIPP will send you monthly reimbursements for all or a portion of the cost of the COBRA plan.

 

What is employer-sponsored insurance (ESI)?

Employer-sponsored insurance (ESI) is health insurance that employers offer to their employees, and is typically offered as part of an employee benefits package. ESI is offered to current employees.

Am I eligible for Arkansas HIPP if I have insurance that is not provided by an employer?
No. Arkansas HIPP is offered to clients who have access to employer-sponsored insurance or coverage through COBRA.

 

Applying for HIPP Benefits

There are three ways to apply for Arkansas HIPP benefits! You can:

• Fill out and submit an online application
• Print a HIPP application and mail in or fax your completed application
• Call our toll-free line 1-855-692-7447 to start your application over the telephone.
•  

Submit your completed application and documents by:

 

Toll-free Fax: 1-855-777-1001, or
Mail: HMS
Attn: AR HIPP
1818 N. Taylor St. #360
Little Rock, AR 72207

 

 

You must be able to provide the following Information:

• Policyholder’s Social Security number
• Policy number & group number of the group insurance
• Employer & employee share of premium cost
• Case identification number(s)

Along with your application, you must provide a copy of:

• Insurance card (front and back)
• Summary of benefits for your plan or desired plan
• Employer health insurance rate sheet
• Paystub if it shows premium deduction

We had on of or local moms put this together for additional assistance.  Thanks Amy Kinnard.


Lessons learned when applying for ARHIPP:

1. Apply online. https://pierweb.hmsy.com/Arkansas/hipponline/OnlineApplication.aspx

2. Better to email (customerservice@myarhipp.com) all your documents instead of faxing.
(Include pay stubs starting with the month you are applying, signed doctor's statement regarding your child's diagnosis, current plan benefit summary page with company logo, current plan rates, W-2, document showing your plans open enrollment dates, plan coverage dates)

*If you don't have access to a scanner, take pictures of each piece of information to send as jpgs instead of pdfs.

3. If your spouse is the policy holder, have him/her call and add your name to the account. He/she will need your date of birth and social. Failure to do this means that you won't even be able to call in and check on the status of the account. If your spouse doesn't have time to call, include a letter signed by him/her with the needed information to be sent along with the other documents. Only the person who is the primary insurance holder will be able to make changes or request information.

4. As soon as possible, find out what case # has been assigned to your account. Add this number to EVERY piece of information you email!!!

5. After emailing your documents, call a few days later to verify the information was received and linked to your account.

6. Create file folders both on your computer and inside your email account to store the pdf documents you sent and the actual emails sent so you have record and can quickly "re-send" if you are told the email in question was never received on their end.

7. Keep a telephone log. Write down the date, time and customer service reps name, and a brief description of what was discussed each time you call.

8. Understand that the person you are talking to when you call customer service is based in North Carolina and will have to send all your information over to your case worker in Arkansas.

Contact Us

AR HIPP
1818 N. Taylor St. #360
Little Rock, AR 72207

Toll-free Phone: 1-855-MyARHIPP (855-692-7447)

Toll-free Fax: 1-855-777-1001

 

Email: CustomerService@MyArHIPP.com

 

 

 

 

ARHIPP

 

 

 

 

 

 

 

WrightsLaw From Emotions To Advocacy

 

Lending Library Item

 

 

 

 

 

How the Book is Organized

Section One: Getting Started 

In "Getting Started," you will learn:• Basic advocacy skills
• Supplies you need to get started
• How to develop a master plan for your child’s education
Section Two: Advocacy 101

In "Advocacy 101," you will learn about:• Schools as bureaucracies and the rules of the game
• Obstacles to success – school culture, myths, gatekeepers, and emotions
• Common causes of conflict
• Steps you can take to prevent or resolve problems
• Events that trigger parent-school crises

 

Section Three: The Parent as Expert

In "The Parent as Expert," you will learn:• Why you must become an expert about your child’s disability and educational needs
• How to organize your child’s file, step by step
• How to use information from evaluations to understand your child’s disability
• How to use test scores to monitor and measure your child’s progress
• How to write SMART IEP goals and objectives

 

 

Section Four: Special Education Law
In "Special Education Law," you will learn about:• The Individuals with Disabilities Education Act of 2004 (IDEA 2004)
• Findings and purposes of the IDEA
• Definitions in the IDEA
• Extended school year (ESY), child find, least restrictive environment (LRE), private placements, statewide assessments
• Requirements for identifying children with specific learning disabilities - Discrepancy Formulas and Response to Intervention (RTI)
• Evaluations, eligibility, IEPs, and placement
• Prior written notice, procedural safeguards, mediation, due process hearings, appeals, discipline, and age of majority
• Section 504 of the Rehabilitation Act
• The No Child Left Behind Act and implications for children with disabilities

 

 

Section Five: Tactics and Strategies
In "Tactics and Strategies," you will learn about:• “The Rules of Adverse Assumptions;” first impressions; image and presentation
• How to use logs, calendars, and journals to create paper trails
• How to write effective letters (includes sample letters)
• How to write a persuasive “Letter to the Stranger” (includes sample letters)
• How to use IEP worksheets, parent agendas, visual aids & graphs of progress or lack of progress (includes sample worksheets and agendas)
• Roles of experts; how to use an expert to help develop an appropriate educational program
• Pros and cons of recording meetings; strategies

 

 

Current Status

 

Available

 

Available for purchase here.

 

 

 

 

 

 

 

 

 

 

Your Loved One Is Having a Baby with Down Syndrome

 

 

 

Lending Library

 

 

 

 

 

 

When you learn that someone you love is expecting a baby with Down syndrome, you naturally have concerns, and wonder what to say and do. This book will help you through your initial, normal reactions of sadness, shock, and worry, and give you the information and perspective you need to welcome a baby with Down syndrome. It covers:

• Down syndrome biology, physical characteristics, medical condition, development
• what the diagnosis means to the family
• what the future holds (information & inspiration)
• resources for relatives who speak Spanish
• helping expectant parents and yourself
• sample letter to a friend who’s expecting
• estate planning & monetary gifts
• a grandparent’s story

 

Current Status

 

Unavailable

 

Click here for free online version

 

Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome

 

 

Lending Library Item

 

 

 

 

 

 

If you're awaiting the birth of your baby with Down syndrome, then this book is expressly for you. Keep it close at hand to help you understand what to expect between now and the birth of your child, and beyond.

 

Including intimate and joyful photos of moms-to-be, babies, and families, Diagnosis to Delivery will answer your pregnancy and birth questions, validate your emotions, provide coping advice, and give you hope for your baby’s and family’s future. It covers:

• medical providers including specialists
• coping with the diagnosis 
• pregnancy concerns
• sharing the news with family and friends
• dealing with comments 
• preparing your other children 
• creating and evaluating your birth plan
• preparing for breastfeeding
• first year medical issues
• finding services
• understanding cognition
• getting support
• finding resources

Current Status

 

Available

 

 

Click here to download the free online version

 

 

Down Syndrome The First 18 Months (DVD)

 

 

 

Lending Library Item

 

 

 

Filled with adorable images of babies with Down syndrome, inspiring stories of parents, and practical information from the leading Down syndrome experts, this video is a reassuring and realistic introduction to the unique joys and challenges that children with Down syndrome bring to their families during critical first 18 to 24 months of life.

Will Schermerhorn was inspired to make this DVD after his son with Down syndrome was born and he observed his wife's relentless pursuit of information that would comfort and empower. He interviewed thirteen leading medical and developmental experts on Down syndrome. 108 minutes.

 

 

 

Current Status

 

Available

 

 

Click here to purchase through Amazon.

 



Brain Development in Down Syndrome May Be Enhanced, Doctor Suggests

 

 

Emmalin is very excited with this latest article supporting our beliefs.

 

 

TUCSON, Ariz., March 3, 2014 /PRNewswire-USNewswire/ -- Genetic diseases are generally thought to be untreatable, but the underlying mechanisms are biochemical and thus can possibly be modified, writes Los Angeles obstetrician P.J. Baggot, M.D., in the spring issue of the Journal of American Physicians and Surgeons.
Down syndrome results from an extra copy of chromosome 21 (trisomy 21), and thus three copies of each gene instead of two. Either excess or deficiency of various factors can have a detrimental effect on brain development, which involves both proliferation of nerve cells and selective pruning.

Baggot provides three case reports of mothers who attempted to enhance their babies' brain development both before and after birth. They used nutritional supplements, including high-dose vitamins, and stimulation through music and reading aloud.
Four babies (one set of twins) were born lacking typical facial features of Down syndrome, despite confirmation of the diagnosis through chromosome typing. 
 
Intellectual development far exceeded expectations. One child at 34 months met some speech milestones for four-year-olds. A video demonstrated a 17-month infant reading and responding with gestures. A second video showed a 23-month infant reading aloud from flash cards. A third video showed a newborn crawling on the third day of life. These achievements would be admirable in children without Down syndrome.

Previously, six randomized controlled trials showed no benefit from multivitamins in Down syndrome. However, treatments were limited in duration and given late in development; most had no patients under age five. According to Baggot's "five-square" developmental enhancement paradigm, it may have been too late.
"In development, timing is everything," Baggot writes. A valid treatment given too late may have no detectable effect. But correction of nutrient deficiencies earlier, even prior to conception, may have effects years or decades later. Intrauterine factors may have a bearing on adult diseases at ages 60 to 80.

There is now a mouse model for Down syndrome, Baggot writes. The Ts65Dn mouse is trisomic for most of the genes found on human chromosome 21. It has physiologic, anatomic, and functional impairments similar to those in human Down syndrome. Prenatal and postnatal biochemical treatment and environmental stimulation have led to behavioral and cognitive improvement, as well as brain growth and more neural connections.

The replication, survival, and organization of brain cells can be enhanced in many ways, Baggot concludes. "Case reports suggest that several nutrients and drugs are promising. Experiments with mouse models may lead to effective treatments. Proper timing of treatment is crucial."

Importantly, "better understanding of brain development could benefit all children, not just those with Down syndrome."
The Journal is the official, peer-reviewed publication of the Association of American Physicians and Surgeons (AAPS), a national organization representing physicians in all specialties, founded in 1943 to preserve private medicine and the patient-physician relationship.

SOURCE Association of American Physicians and Surgeons (AAPS)

Where we started-June 2011-December 2013

Emma Reading February 2013

August 2013-Talking at 25 months

August 2013-Reading at 25 months

November 2013-Sorting-2 years 4 months

November 2013-Strong girl sliding

November 2014-Letters

January 2014-Calling the HOGS!!

January 2014-Naming objects

February 2014-80 Word in 5 Minutes

 

 

March 2014-Emma Reading First Book

 

Read more: http://www.digitaljournal.com/pr/1768652#ixzz2vNUpqCQC

It is not going to be okay...It is going to be INCREDIBLE!!

If we could change her in any way-we would not.  Down syndrome became a part of our family in June of 2011 and we have all been forever changed and blessed.

Thank you God.

 

 

 

Robin and I had the honor of meeting with the amazing group behind this:

 

 

What an amazing ministry!  We reached out to ask what we could do to help.  We have always been saddened by the abortion rate, but even more saddened by the abortion rate of children with Down syndrome.  If only people really understood what Down syndrome really looked like, things just might be different.

 

 

 

 

 

Statistically, every 20 seconds in America, an innocent child loses their life at the hands of an Abortionist. 

Abortion will NOT be stopped at the voting booth and history has shown this time after time. It will take local grassroots movements from God's people in every city across the country. We as Christians can no longer feel satisfied simply voting Pro- Life, we must live Pro-Life.
Every20seconds.org is not a protest group. It is a rally cry for the church to stand up and love outside the walls. 

God clearly defines his love for children in the Bible, and now we have to ask ourselves, what is the life of a child worth to us?

http://www.every20seconds.org/

It only takes a few to make a big difference.

 

Emmalin at age 2.

 

 

 

 

 

 

Presley at age 2.

 

 

 

 

 

To everyone that says

SHE WON'T

Well,

SHE IS:

 

reading

running

dancing

singing

counting

identifying shapes and

colors and

letters and

numbers

playing house

and dress up

and doing all the things other toddlers do.

 

 

"Congratulations, you are one of the lucky ones.  You are about to experience the most amazing journey that only a parent of a child with Down syndrome gets to experience."

 

Jane Mier, Emma's pediatrician

 

 

Precious Baby Ministry

Two years ago, Tricia and I were both blessed with wonderful little girls who happen to have Down Syndrome.  We were not aware of  the diagnosis before they were born.  The doctors and nurses said "I'm sorry" several times and told my husband and I what my daughter would "never do" like read, drive, have a decent IQ.  They then informed us of all the potential medical complications that could occur.  It was overwhelmingly negative and we allowed them to steal our joy surrounding her birth. 

Those words fueled us to prove them wrong.  As we educated ourselves more about Down syndrome, we realized children and adults with DS can do all of this, and anything else they want to do.  They can dance, sing, play musical instruments, give speeches, become a composer, become an actor, drive a car, inspire others, help others, and so much more. 

We made it our goal to "raise awareness and expectations" and to help other parents experience this realization from the beginning.  We wrote a small book for new parents to explain things like TEFRA, therapies, alternative choices, with encouraging stories, oral motor techniques to begin right away, and a list of numerous websites and blogs that would inspire and motivate them.  We give this book, along with a gift basket full of goodies and a prayer blanket to each new or expecting parent we encounter. 

We personally talk to each new or expecting parent as soon as we receive a call from the genetic clinic, hospital, therapist, or friend. We introduce them to families who have child with DS of similar same age.  We add them to the Arkansas Facebook page called "Buddy Talk" which was organized for DS families.
Buddy Talk is like having your own personal support group. Buddy Talk organizes family events every 2-3 months here in central Arkansas like the water park, zoo, museums, and picnics in the park. 

We link the new families with the Arkansas Down Syndrome Association, so they can receive letters for upcoming events.  Sometimes, we just let them see our 2 year old daughters playing, enjoying life, and getting into mischief like any typical two year old.  This seems to alleviate more fears and doubts for new or expecting parents than anything we can say to them. 

We are now blessed to be able to take a dinner to the hospital when the children with heart defects are having their surgery at 2-4 months old.  This allows the parents a mental break without leaving the hospital, while one of us sits with their precious baby singing or reading to them. 

Our Precious Baby Ministry has grown and extended to NE Arkansas with Shannon sending out 4 baskets last week and meeting with families.  The Arkansas Down Syndrome Association now has a link so families can download the book themselves in case we did not receive a call about them.  (see link Precious Baby Binder under infant and early childhood at http://www.ardownsyndrome.org/ )  Two years into our journey with Presley and Emma, we are amazed by everything they CAN do and WILL do.  They have such a positive influence on people and can change your heart, you outlook, and your life if you let them. .

Today, we attended a miniature horse show fundraiser for Precious Baby Ministry hosted by Brigg's Equipment and put together by Natural State Miniature Horse and Shetland Pony Association.  Todd and Jennifer Crowder where so generous with giving all proceeds to our cause.  It is heart warming how many strangers show support for our children and want to help any way they can.  A simple thank you does not seem enough.  We met some amazing people today.  

Just remember, you can make a different with one small step at a time.  Keep moving forward.

Here are some pictures of the show today.  The picture quality is not so great, because I was holding a squirming 2 year old.   Blessings, Robin

Payton & Presley.  Presley thought the water in the horse's bucket needed some stirring.

Two princesses walking in the show.  How great is it to teach children compassion so early?

The flyer.  All proceeds went to support our cause. People making a difference.

A two year old girl in the show.

Olivia, Bekkah and Kenzie loving the horse show.

Emma, her Nana and her brother Grant.

The costume part of the show. They were going swimming.

My wonderful family. 

Picture doesn't do it justice, but this horse was dressed up like a dinosaur. 

  

The children had such a good time!

$1,650 total was donated. $550 was from the children's bake sale. We are so blessed! Remember to enjoy your journey and your Precious Baby.

Todd and Jennifer Crowder with Natural State Miniature Horse and Shetland Pony Association taking photo with Tricia and little Emma who passed out from all the fun.

https://www.sites.google.com/site/naturalstateminiaturehorse/

A special thanks to Frank Glasgow with Briggs Equipment for all of their continued support.  They have been responsible for raising money and awareness.  We could not do it without people like this. 

http://www.briggsequipment.com/

Video for New Parents and Medical Staff

When we were given Emma's diagnosis it was basically said in passing.  It was assumed that I already had a diagnosis.  I will say though that after the initial ripping off of the band aid the medical team was incredible.  They were kind and very positive.  My dear friend Robin was not so fortunate.  The first few weeks are so crucial.  Parents need to understand that Down syndrome is nothing short of GREAT in our world.

Great video for the medical community and new parents.  I can not wait to see what the next generations achieves.

http://vimeo.com/66687709

Extra Chromosome, extra martial bliss? (article)

I thought this was a cute and well written article about the "Down Syndrome Advantage" when it comes to divorce rates and the special needs community.  Check out the article at: http://www.sheknows.com/parenting/articles/991053/divorce-does-the-down-syndrome-advantage-exist

Blessings, Robin

Can a child's extra chromosome exponentially strengthen a marriage? Research points to a lower divorce rate compared with parents of children with other disabilities and even couples whose children have no special needs.

Extra chromosome, extra marital bliss?

Parents of a child with Down syndrome agree — something special exists in their marriage.

Our crazy, imperfect, awesome story

Four years ago, I didn’t know my husband existed. Today, we’ve been married more than three years and have two toddlers, a dog and two cats (despite the husband’s best efforts on the latter).
Ours is a fairy tale with a dash of unorthodox behavior by a good Catholic girl and an out-of-wedlock pregnancy I dread explaining to my daughter (hello, karma). Our story is pretty simple — boy emails girl, girl agrees to meet boy at Macaroni Grill on a Saturday afternoon, girl shops for new outfit for first “real” date.
As the camera cuts to our next pivotal scene — a mere two months later — boy is grinning wildly at girl’s positive pregnancy test and girl is certain she is experiencing hot flashes of menopause.
A quick jump to a month later, and boy proposes to girl in girl’s childhood bedroom. Add another month, and girl marries boy surrounded by loving family and as many bacon-wrapped hors d’oeuvres as girl’s father’s budget would allow (he’s very generous).

Image credit: BrianTreffeisen.com

What scene did I skip? The dinner we had together, three nights before we became husband and wife, when I shared that the genetic counselor had called to tell us our unborn son had Down syndrome.
If I’m filming an epic movie of our lives, I will zip past that, because it was but a blip. We went through so much together — from learning we were parents mere moments after exchanging the "L word" to learning our baby had a life-threatening condition called hydrops. Down syndrome was, at the time and in retrospect, the least of our worries.
We believe we are soul mates, and we have equally immeasurable love for our children (maybe not the cats, but that’s another article). But we also know studies show parents of children with special needs have a higher rate of divorce than parents of typically developing children.

Read more about divorce rates for parents of a child with autism >>

Does extra chromosome decrease divorce rate?

Here’s an extra dash of statistical positivity for our already committed married selves — we have a child with Down syndrome, and that fact might just change everything.
A study by the Vanderbilt University Kennedy Center looked at the rate of divorce in families of children with Down syndrome compared to families of children with other disabilities and families with no noted disabilities. Data came from the Tennessee Department of Health's birth, hospital discharge and divorce database records from 1990 to 2002.

Rates of divorce:

• Down syndrome – 7.6 percent
• No disability – 10.8 percent
• Other disabilities – 11.2 percent

The results showed divorce rates among families of children with Down syndrome were lower than in the other two groups.
Study results showed spouses who had a child with Down syndrome were just like all married couples in several regards — they were much more likely to divorce if they were younger, had not graduated from high school or lived in a rural area.

'Down syndrome advantage'

So, what’s different about a couple who has a child with Down syndrome?
"Lower divorce rates in the Down syndrome group may be due in part to what the researchers call the 'Down syndrome advantage,' which refers to the personality and behavior of most children with the syndrome and the fact that parents of children with Down syndrome are often older, more educated and married before having children," reported Vanderbilt University Medical Center.
Researcher Dr. Richard C. Urbano said, “When divorce did occur in the Down syndrome group, however, a higher proportion occurred within the first two years after the child's birth.”

Doing the math

Image credit: Scott Hunter Photography

The husband and I are definitely older (40 and 37, respectively, when we welcomed our son). We each have a bachelor’s degree, and I’m leasing to own a master’s degree. We did, in fact, marry before we had Charlie. (“Had” meaning “met in person.”)
As for those first years of marriage? Absolute hell, thanks to my whopping case of post-partum depression and the typical strains of a new marriage, new home and two new jobs. But we made it through. What portion of stress came from Charlie's extra chromosome? Not one. Having a new baby is a life-changing experience — the extra chromosome just meant when we got enough sleep to have a conversation, occasionally a word related to medicine would slip out.

The effects of unconditional love

Tamara has a son with Down syndrome and says the study results “[make] sense to me... [my son] is the most pure and genuine person I know! His happiness for life is contagious and he demonstrates unconditional love daily! If we can use that as a model for our marriage, then what is left to fight about?”

But what about stress on a marriage?

More recently, in July 2011, the American Journal of Medical Genetics published results of a survey titled, Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. Drs. Brian G. Skotko, Susan P. Levine and Richard Goldstein led the research.
Of survey respondents, 11 percent agreed with the statement, "Right now, my son or daughter with DS is putting a strain on my marriage/partnership."
Interestingly, a statistically insignificant but slightly greater number of respondents agreed with the statement, "Right now, my children without DS are putting a strain on my marriage/partnership."
Researchers shared, "The overwhelming majority of parents who have children with [Down syndrome] report that their outlook on life is more positive because of their son or daughter with [Down syndrome]."

What we have here is... more communication?

"We tell each other the good, the bad and yes, even the ugly."

Some parents queried by SheKnows pointed to the increased — and perhaps improved — communication shared between spouses.
"From day one we agreed to speak openly and honestly about [our son], the diagnosis and all things in and around Down syndrome," Beth shares. "We tell each other the good, the bad and yes, even the ugly. Having each other to talk to and listen to has made us a stronger couple! The theme of open honesty has spread to all aspects of our relationship."

Perspective and faith

Perhaps the impact on spirituality weaves a tighter marriage bond? Joanna has a son with Down syndrome, but he fought much more serious medical conditions during her pregnancy and his infancy. She points out, "It’s amazing when you have a newborn that was so close to being taken from you how quickly you find yourself on your knees begging God."

Required: Senses of humor

My parents have been married 42 years, and my mom’s favorite line regarding marriage goes like this: "Divorce? Never!" she exclaims, as if it's an insult to even consider. "Now, murder… well, that’s another story," she closes with a knowing look.
The husband’s parents have been married for 56 years, and his dad’s favorite quip is, "I could have killed someone and gotten less time."
It seems that the secret to a long and laughter-filled marriage is, in fact, a regular mention of death. One mom’s response was too entertaining for this writer to disregard, but she didn’t want to be quoted, so we’ll call her Lucy.

"Who knows why our marriages last… but I'm glad it's that way."

When asked her thoughts on why parents of children with Down syndrome have a lower rate of divorce, Lucy replied: "because we can't afford divorce... we're broke with all the medical bills and therapies," she jokes. "Seriously though, [our daughter with Down syndrome] has made me more tolerant of imperfections. Who knows why our marriages last… but I'm glad it's that way."
How much weight should we give these studies? Larina has a daughter with Down syndrome and a daughter who does not have Down syndrome. Her evaluation of the studies may say it all: "Divorce is one thing... strain on a marriage is not measured!"

Images courtesy of Maureen Wallace

Healthcare Guidelines Specific For DS

The pediatric health guidelines for caring for a child with Down Syndrome were updated in 2011.  Your healthcare practitioner may not be aware, so please copy this and provide them with the new standards.  Healthcare evaluations for a child with Down Syndrome is very different than the well baby check ups for typical children.

2011 Healthcare guidelines for DS:

http://pediatrics.aappublications.org/content/128/2/393.full.pdf

A Father's Perspective- Letter to His Daughter

Heath White's journey has been one very close to the heart of Robin and Seth Tolliver.  Heath's story helping Seth through his healing and acceptance process.  He is a true inspiration to all father's and his story is incredible.  Below you will find the letter written by Heath along with a story that ESPN did on him and his family.

http://espn.go.com/video/clip?id=8450488

A Father’s Perspective                                                                                                                    

Dear Paisley, I wanted to take a second, while the feelings are still relatively fresh, to let you know about the emotional rollercoaster you have put me through for the past 2 years.  I started writing this as a speech to be delivered when you were 18 months old.  I wanted people to know just how much I love you and how much you have taught me, but I found myself not being honest about my initial reaction to having a daughter with Down Syndrome.  I was afraid you would someday find out how scared and selfish I used to be.  The more I thought about it, the more I decided that I want you to know the truth.  Maybe our story can help other people see the light sooner than I did.  Letting you know how much I didn't want a daughter with Downs shows the full spectrum of emotions you have taught me and the amazing influence you and other kids with disabilities can have on this world.  I have written probably hundreds of papers in my life and between a long academic and military career I have given just about as many presentations, but this one could be my most challenging.  Writing a good paper or speech involves two things, knowing your topic and knowing your audience.  In both cases it’s you, Paisley.  The topic is the easy part, but since you’re so little I have no way to know what your level of reading comprehension will be.  Despite this uncertainty, I am going to write to the woman I know you will become.  I will keep this letter with me to motivate your mother and I to work so that you can someday fully grasp the love behind these words.

To say that you now define me is no small statement.  I've made my life seeking degrees and titles that let people know what I've accomplished, but there's no title I'm more proud of than simply being Paisley's Dad.  Two years ago if you would have told me I'd view my greatest accomplishment as having a daughter with a perceived disability, I would have told you, you were crazy.  But today I am making a feeble attempt to put into words my journey and love story with you, Paisley Ella White.

As I said before, some of this is not pretty.  If you think I'm a horrible person in the beginning, that's fine.  I want to lay my soul bare, so that in the end, when I tell you that I love you more than life, you will know that I've been completely honest about everything, and you will have no reason to doubt my love.  My ultimate goal is for others to learn from my mistake.  If they can see the inevitable love they will have for their child sooner than I did, then perhaps they can live without the regret of having thought of their child was anything less than the perfect and beautiful little person you are.  

To put everything in context, let me recite my resume for you.  This was my favorite topic of conversation before you came along.  I was Captain of my High School football team.  I graduated 3rd in my class and attended Northwestern on an Academic scholarship where I graduated with a 4.0 GPA.  I received a scholarship to SMU School of Law but chose to join the Air Force and fly bombers instead. I married my high school sweetheart, your mom the head cheerleader.  I have my Master's in Aeronautical Science again with a 4.0 cumulative GPA.  I've run over a dozen marathons with a personal record of 2:58 in the Boston.  As a pilot, the Air Force and several other government agencies have put me through countless physicals and mental evaluations to screen me for almost every disease or abnormality known to man.  In my three yearly physicals, the only comment I ever get is, ”Wow, your pulse is so               low you must a lot.”  I think that’s why your heart defect scares me so much.  My goal was always to leave the military, fly for the airlines, get a house on a lake, and retire with a couple of million dollars.  Along the way I guessed we would have a couple of kids probably a boy and a girl, but once they left for college we probably wouldn't see them much.  They'd be too busy being successful and chasing goals like me.  It was the real American Dream, apple pie kinda future.

Read that last part again if you need to, but nowhere in there did I mention raising a child with what society views as a disability.  That would be beneath me.  I've got genetically superior genes.  I come from "Good Stock".  At 82 all four of your great-grandparents are still alive; no one on either side of our family has a child with any type of abnormality.  As I said before, look at my numbers, my titles, or degrees.  I'm a winner with winner’s blood.  Having a child with a disability was for nice, loving couples, who would make lemonade when life gave them lemons, not hard charging go-getters like me.  Besides, I had always been supportive of people with disabilities.  Despite the fact that we didn't know a single soul with Down Syndrome, we went to the Buddy Walk for the 3 years prior to your arrival.  I had also volunteered at the Special Olympics, but this was all for other people’s kids, not mine.  Looking back on it I think it was like thanking God for making me healthy.  It's sad to say, but it was like passing a car wreck on the road.  In my view Down Syndrome had wrecked their lives.  Like any highway tragedy, I felt sorry for those involved, but I still had to slow down, look, and thank God it wasn't me.  In my mind by going to those events, I was putting in my time, so something like that wouldn't happen to me.  In fact, when I found out for sure you would have Downs that's exactly what I said.  Why me?  I've been supportive of people with disabilities.  I've done what my momma taught me.  I never used the "R word", I didn't pick on handicapped kids in school, or stare in public, so why me?  Looking back I can tell you why me?  And it was from a brief encounter with an angel at one of those Buddy Walks.

They say hind sight is 20/20, and looking at it now, I should have read the signs that you were coming and that you'd be special.  In addition to the Buddy Walks, your big sister's triple screen, or prenatal blood test, came back positive for Down Syndrome.  Since there is such a high false positive rate and since I was convinced of my genetic superiority, I was confident the test was wrong.  Three weeks later the ultra sound confirmed that your first sibling did not have Downs.  Although the ultra sound confirmed my perceived genetic superiority, it dealt a serious blow to my ego, because I was having a girl.  This didn't match with my view of the future.  The boy was supposed to come first.  I worked hard to change my vision of the future.  Slowly I replaced footballs and muddy boots with dance leotards and tea party sets.  It was difficult but I did it.

Fast forward 2 years.  Same triple screen, same ultrasound, same gender, different results.  The doctor’s said, “There’s a high probability you’re daughter will have Down Syndrome.”  This is where my downward spiral began.  We went back every two weeks for ultra sounds, and every time the tell-tale signs of Downs were there, the thick nuchal fold, failure of the embryonic sacs to fuse at the proper time, and a heart abnormality.  I began to pray constantly.  I was no longer cocky and in control.  Before this I would        pray and just thank God for your mom and sister, my health, and all the material things he had given us, but now I prayed for a miracle.  I would say a girl is fine.  I'm not picky any more, just let her be healthy.  This was part of the bargaining process I'll talk about later.  Now everyone knows I’m terrible with surprises.  If the information is out there I have to have it.  As a result I pressured your mom to have Amniocentesis, so I could know for sure.  I was so selfish at the time that to me the risks to you and your mom didn’t outweigh my desire to know for sure.  Needless to say, it came back positive.   Replacing footballs and muddy boots with dance leotards and tea party sets is one thing, but to replace the captain of the football team with a physically and mentally disabled child was incomprehensible at the time.  A world of questions began to flood my mind.  What would your potential be?  Would you be able to speak?  Would you even know who I am, or would you just set in a catatonic or vegetative state and stare into the distance locked away in your own undeveloped mind?  Again, all I could think was why me?  I'm as healthy as a horse, I've served  my country during war, I've never done drugs, and always paid my taxes.  Like I said, this "Daddy thing" was always supposed to be a part-time gig for me.   It was going to 18yrs then see ya.  I didn't sign-on to have a kid with me for life much less one with a disability.  How was this part of the American Dream?  I already had a little girl.  This one was definitely supposed to be a boy.  I even already had the name picked out.

Later on I read that learning you're going to have a child with Downs is like experiencing a death.  You have a vision of who your child will be, what they will look like, and all they will accomplish, then one little chromosome changes everything.  It's also been compared to being a child at Christmas and waiting to open a big shiny present.  You can tell by the size and shape that this is the one that you really wanted.  Now imagine when you open it, it's broken.  That's what I felt, like I was getting, a broken baby.  I felt like I was in Junior High all over again.  How could I go to school knowing all my friends would be wearing the newest cool clothes and I was wearing stuff from Goodwill?  All I could think about was myself and how you reflected on me.  I'm more ashamed of this than anything in my life but that's the way I felt, like you were broken.  I went through the entire grieving process, and all the emotions that accompany a death. First, it was denial.  I caught myself saying, "this isn't happening to me!"  Next came anger.  I was mad at everyone, God, your mom, and  everyone who never had to experience adversity during pregnancy.  Like I've said before, I would ask, "why is this happening to me?"  Then came endless bargaining.  I would tell God, "If you take away the Downs I promise I'll be a better person."  Next came depression.  I told myself' "I don't care anymore.  I'll just go to the airlines, never be home, and leave your mom to deal with this."  The last stage of grief is acceptance.  This happened shortly before you were born.  This is where you say, "I'm not looking forward to this but let's do it."  I went through them all, but unlike grieving there's another stage to having a baby with Down Syndrome, and that is pure joy.  This is the stage I’m in right now.  

As you probably know by now your Dad likes to consider himself a thinker.  So, you really threw me for a loop.  No matter how much studying, logic, or reasoning I threw at this problem there was no solution to be found.  And unlike a physical threat there was no person or being I could fight or out run.  It was like looking down the barrel of a loaded gun with a Downs Baby ready to hit          me right between the eyes.  Only that's not where you got me.  You went straight for the heart.  I wish I would have known then what I know now.

When I finally reached the acceptance stage a month or two before you arrived, I decided to do what any good military officer would do if heading into a conflict, study my enemy, Down Syndrome.  I needed to know what it was, what were it's strengths and weaknesses, and how bad is this really going to be.  You see, despite the time I had spent around children with Down Syndrome, I had never truly seen them for who they are.   If I had of been a participant rather than a spectator at those events I would have known Downs isn't the enemy, it's society's perception of Downs that is the enemy.  In the course of my readings, parents would write about what a joy their child is or how they will teach you so much, or they are the glue that holds their family together.  During my acceptance phase all I could say to this was "horse hockey."  These were the statements of weak minded optimists, losers who had accepted defeat to Downs.  You see for me to be happy about having a daughter with Downs meant that all that I had worked for, all the prestige and honor I sought was a charade.  It meant there could be happiness without accolades and honors.  Although I accepted having a daughter with Downs, nobody said I had to like it.  Little did I know that all the anger and disappointment in the world didn't stand a chance against the light in your eyes and the toothless little smiles on your face.  

I wish I could tell you that the day you were born all that anger and disappointment just  miraculously melted away.  I wish I could tell you that when I saw other babies beside you I didn't notice your short little neck, your almond shaped eyes, your nub of a nose, or the gap in your toes, but I did.  I wish I could tell you I wasn't jealous of young unwed couples who had smoked and drank through their pregnancy only to have healthy typical children, but I can't.  What I can tell you is that the first time you laughed when I tickled you all my anger and disappointment vanished forever.  I can tell you that since that epiphany, not a day goes by that I don't kiss your short little neck, your almond shaped eyes, your nub of a nose or the gap in your toes.  And I can tell you that if I could go back in time I wouldn't change anything about you.  To me you're perfect, because you represent what's good in me.  Although you're only 18 months old you've taught me so much.  You've taught me to not take anything for granted.  That it's not about who gets to the finish line first but how far you come to get there.  You’ve taught me that victory doesn’t come from the defeat of others but from doing what you thought was impossible, and finally, you’ve shown me that a genuine smile is contagious.  I often think that you’re much wiser than you appear.  In my opinion you simply choose to have Downs because you know that's the only way to reach people like me.

It wasn't long after you were born that people would ask, "how's the baby?"  I would say, "she poops, pees and sleeps as good as any baby."  And it was the truth.  I finally realized you were as good as any baby.  You hadn't changed; the symptoms of Down Syndrome had not changed.  Only my perceptions had changed.  I went from saying why me to saying why not me, instead of saying why Paisley to saying why not Paisley?  A little bit of my confidence returned.  I knew that if there was anyone in this world that could help      you reach your full potential it was me and if anyone could make the best out of a bad situation it was you.  I had a new goal.  Not to cure you of Down Syndrome, like your Mom and I have said, I wouldn't take the Downs away if I could.  Without Downs you wouldn't be the Paisley we know and love.  Without Downs you'd be just like everyone else, and how boring would that be.  My new goal was to help you reach your full potential and live the happiest life you can.  I like to kid myself that you knew I would turn around the whole time and that's why you picked me to be your dad, but I know that you really picked your Mom and I'm simply the box that came with the toy and cheeseburger in your Happy Meal of a life.  I'm flattering myself at that, but like it or not you're stuck with me.  

I had mentioned an experience I had at one of the Buddy Walks.  This particular year we took our Yellow Labrador Retriever, Cletus, to the walk.  I was squatted down letting a group of children pet him when a 4 or 5 year old little girl with Downs walked up without saying a word, moved my arm off my knee, climbed in my lap and then reached over and put my arm back around her.  I looked around for her parents; sure that someone was going to accuse me of being a kidnapper, a pedophile, or at best just a creep.  After a few seconds with her head leaned back against my shoulder, her mother turned around and smiled at her daughter.  To my surprise she wasn't quick to snatch her daughter from my embrace.  I appogetically said that she just climbed in my lap.  Her mother laughed and said, "yea, she does that."  The mother reached out for her daughters hand and the girl walked away without ever looking back.  It was a notable experience at the time, but I never grasped its significance till you came along.  Looking back on it now I think she was testing me.  I dream that you were up in heaven looking for a good daddy and told her to take my hug for a test drive.  I joke with your mom that it's either that or she gave me Downs.  Either way is fine, because I got you.  To say it was one of the most memorable and life changing experiences I've had, is an understatement.    

As a marathoner, there's plenty of time to think.  It's on long runs that I wrote my thesis, painted my ever changing picture of the future, or now daydream about the women my daughter's will become.  Around the time you were 6 months old the guilt began to sink in about how I had felt and all the pressure I had put on your mom for having you.  I decided to run the Little Rock Marathon to show people how proud I am of you, how anything is possible, and to punish myself for being so selfish and ignorant.  Every training run I thought about you and how you would drive me to be a better father, husband, friend, and runner.  You were the gas that fueled my engine.  Every time it hurt or I wanted to quit, I thought that it was nothing compared to the challenges you had faced and will have to overcome your whole life.  What kind of example would I be setting if I gave up and didn’t give it everything I had?  It turned out that the race wasn’t the punishment I had been seeking.  To tell you the truth, I probably got more out of it than you did.  For those 26.2 miles, I didn't feel anything but joy and pride.  I couldn't wait to round the next corner or top the next hill so everyone could see just how beautiful you were and how you were already exceeding society's expectations.  At the finish line we were interviewed by a couple of TV stations.  When they asked if it was hard pushing a baby that far, I just laughed and told them that it was easy to    run that far when you've got someone with angel’s wings pulling you along.

Before I go, I want to tell you a couple of funny stories comedians have told that summarize what you've taught me.  The first one talked about the recent green movement and radical environmentalism.  He begins a rant about how pompous and self-important we are as humans to believe that we can destroy what it took God so long to create.  Specifically he talks about all the years we buried plastic before recycling.  His conclusion was that maybe we're not at the top of the evolutionary ladder.  Maybe Gods ultimate goal was to get plastic and he only made man so that we would make plastic for him.  That's the way I feel now.  I feel God only made me because he wanted a Paisley.  My whole life I pictured myself as the main character in the action/adventure that is my life.  I think that's why it took me so long to have kids.  I mean look at it, none of the superheroes had kids.  Indiana Jones, Luke Skywalker, and Maverick in Top Gun, none of those guys were dads.  You've taught me that there are other ways to be a hero than saving the world from a diabolical master mind.  You've stolen the show.  I've realized that in actuality I'm just a supporting character in the inspirational/comedy that is Paisley's life.  I don’t know how this story ends, but I think everyone will tell you I’m in  love with the leading lady.

The other story talks about a group of Special Olympic athletes on a commercial flight.  During the course of the flight they experienced a mechanical malfunction and were forced to make an emergency landing.  When the Captain made the announcement to inform the passengers he told them, "Ladies and gentlemen don't be alarmed be we just experienced a mechanical malfunction and we're forced to shut down an engine.  We will be making an emergency landing but don't to be alarmed, everything is under control.  After we land, do not be surprised if we are met by fire trucks.  They are only there for as a precaution.  We will let you know if anything changes."  The comedian said that as his life began to flash before him, he heard one of the Special Olympic athletes say, "fire truck?  We're going to get to see a fire truck?"  The comedian said he thought to himself how amazing that attitude was.  Here he was picturing a fiery death and regretting all his mistakes, while this kid in the back could hardly contain himself at the thought of seeing a fire truck.  You've taught me to look for the good in all situations, and it's never as bad as I think.  You're proof that sometimes the things that you dread the most can become your most prized possessions.

The last little joke that reminds me of you was told by a comedian on a morning show talking about severe turbulence on a flight.  He said that the plane was bumping around pretty violently when it hit an air pocket and dropped several hundred feet.  He said his already vice like grip tightened on the armrest and gasps rippled from the passengers around him as one little 5 year old little girl across the aisle threw up her hands and yelled, "WEE!!"  You've taught me it's all about perspective.  A turbulent flight can either be a horrifying experience or the best rollercoaster ride you've ever been on.  A disability can either be a reason to wallow in doubt or exceed the world’s expectations.  Negative words and stereotypes can either cause you to not try new things or they can cause          you shatter long held misconceptions.  

In conclusion, Paisley, you're my superstar, you're my fire truck and you're my wee.  The other night I went to check on your sister and thought about how it won't be too long till she's gonna be too busy chasing down her dreams to play with me.  I went in your room next and you were so small and peaceful, when it struck me.  The one fear that bothered me the most about Downs, having a kid with me forever is now the complete opposite.  Now my biggest fear is that you too will outgrow me and move on in search of your own dreams.  Before you were born I only worried about how your disability reflected on me.  Looking at it now, there's no better mirror in the world.  You can find the light in the darkest places of my soul and reflect them with a warmth that rivals the sun.  You're my light in the dark and it's a privilege to be your dad.

Love Always,

Daddy

***** Heath White began pushing his daughter Paisley in marathons to promote Down Syndrome Awareness and was followed by ESPN all over the country. Together they ran just over 321 (significant for Trisomy 21) miles with the final race being the Little Rock Marathon March 2012.  He has plans for her to run her own races now to continue the positive awareness .

The Tolliver's were so inspired that they too are racing to bring awareness.  Their first race was the Little Rock Marathon which ironically was Heath and Paisley's last.  We are so fortunate to have a family like the Tolliver's to carry on with what Heath White began.